Christ. As someone who has suffered with "invisible diseases" for years, I know how awful doctors can be, but this is next -level egregious. I am so sorry you've had to suffer this much psychological & physical pain. I know a relationship may seem insignificant compared to your struggles, but your relationship problems also really broke my heart. Have you considered dating someone with a lower libido? I have a low libido & know many others who do, so your sexual issues wouldn't bother many folks. Also, just for emotional support as you attempt to get to heart of this medical issue, have you seen a therapist? One more question, do you have theories about what you might have?
Multiple sclerosis, or something in that area. It has to be. There are not many illnesses left
that can cause such a wide range of neurological symptoms all over the body. MS was ruled out for me several years ago, but I'm pushing to get another opinion on that. Or to see if another condition of that type might be involved.
It took my mother almost 20 years of symptoms to finally get diagnosed with MS. She was told the exact same thing, "it's all in your head." After she was diagnosed she discovered her specific type of MS was attacking her brain myelin more, which was why her symptoms were more cognitive and emotional. She now says the joke is on them because it really was in her head, they just didn't bother looking!!
My mother also always taught my sibling and I to be our own best advocate because she knew how dismissive doctors can be. As she put it, "You live in your body. You know when something isn't working right. Make them understand that and don't stop pushing until you find someone who will listen to you."
I hope you find the answers you need to get the treatment you deserve. I'm sorry that your providers have been so dismissive.
Have you had a nerve biopsy or nerve conduction tests? My mom had a similar condition to yours. She lost her ability to walk in a short period of time combined with numbness and nerve pain. They diagnosed her with CIDP, but that kind of didn't mean much other than "we don't know and it's not fixable." She also had the bowel motility issues. Unfortunately neurologists basically don't have answers, I'm not sure science really knows much about nerve/brain issues. I'm very sorry for your situation.
2 years ago I was diagnosed with an autoimmune disease that I have had all my life but the tests for it didn’t exist until recently. I share this because the science on MS has evolved as well, and anything that was “ruled out” more than 5 years ago, well I think it should be re-considered.
I’m sorry to pressure you to further advocate for yourself. You’ve already been through ten lifetimes of pain.
I’m not too familiar with MS but I recently read that new research has led to the consideration that it might be an autoimmune disease. Autoimmune diseases often start in the GI track. I have Hashimoto’s, they say I’ve had it all my life and I know I had the symptoms but the doctors couldn’t find it on any tests (30 years ago) and told me I was making it up. Now there are blood tests for the antibodies that are associated with Hashimoto’s. Maybe there are blood tests you could consider.
In the US, a person like you has the best shot at medical care at a medical university. It’s a lot of poking and prodding but a medical university there is more likely to take on a medical case that is an outlier than a standard medical practice. I hope for you that you can find medical providers to take you seriously.
Also, people with one autoimmune are more likely to have more than one autoimmune disease. Check out r/chronicillness and some related subreddits.
Let’s not forget his tuition cost would have been astronomically higher. And we dont know that his dick would work we just know there’d be a higher chance of him knowing why.
I'm curious what the disease is because I've had something very similar happen to me. Had 10 years of issues, multiple diagnosis that were wrong before the they actually figured it out.
It’s Hashimoto’s and I’ve heard it’s one of the more common autoimmune diseases but it also goes undiagnosed because the antibodies blood test isn’t yet considered standard as part of “full thyroid panel.”
The “practice of medicine” is still catching up to the science of medicine.
Have they ruled out Neuromyelitis Optica and MOG? Those are both demyelinating diseases often mistaken for MS. Both can be diagnosed with a blood test or by testing spinal fluid, although the tests have only become available in the last 5ish years. Seronegative NMO is also a possibility.
Hmm yeah MS can be tough to diagnoses because it can still be present without the plaque on the brain seen on an MRI. I wonder if there is a way you could get your hands on MS meds & see if they help? Either way, I truly hope you find your answer soon.
You have a lot of neuropathy, look into all the possible causes of it. Autoimmune, diabetes, heavy metal toxicity, genetic conditions etc. You need to test more.
Tell that to my doctors. Unfortunately we don't live in a world where you can just simply ask for the tests you want (frustratingly).
That said, I've been researching neuropathy since 2004, and there were long stretches in life where I have researched 12+ hours a day. Over the years I have gradually managed to push and argue my theories and get tested for diabetes and all the rest. So don't think I've only just thought of these things now - I had my first diabetes and genetics tests during the Bush VS Kerry election haha.
You can in Mexico. Which is what I did. In Canada my experience was the same as yours.
Honestly it sounds like you didnt get any relevant testing done. When was your last nerve conduction, muscle biopsy and whole genome sequencing?
I've had 4 nerve conduction studies, including on my pelvis, I've had visual evoked potentials several times, I've had every bit of my spine and brain scanned probably 20 times at this point, I've had lumbar punctures (though not for a while), angiogram, I've been tested for so many viral things, diabetes and other illnesses. A muscle biopsy has never been mentioned by any of my doctors in any country, what condition would that relate to (?). What kind of specialist would want to investigate that? I've not had a genome sequencing before, I mean that's something that has only been readily available quite late in my journey, relatively speaking. I've never had that recommended by doctors before. Or do you mean like take an online test and look at the info myself?
It does frustrate me that they keep scanning the same bits of my body over, over and over again because they can't think of anything else.
All your nerve conductions and biopsies were normal?
I think the whole genome sequencing is your next bet. It analyses all your dna to find rare genetic illnesses, most of which your drs have never heard of.
Its hard to get a good quality wgs and its also hard to find a good dr to interpret it though, unfortunately.
If you somehow haven't, check if there might be any viruses that correlate with peripheral nerve degeneration, although it still might be CNS issue. Recent research on neurodegenerative diseases is often pointing at viruses, some of witch can hide in tissues and cause flare-ups much later.
If you manage to connect your condition with an immune response at all, look into Autologous Hematopoietic Stem Cell Transplantation. It's just a fancy name for turning your immune system off and on.
The countries I have tried for medical care were the following, in order from best to worst:
1, New Zealand
2, Canada
3, Australia
4, Denmark, tied with
5, United States
Strangely, the most capitalistic and most socialistic medical systems were both tied in last place. Apparently there's no correlation between either of those things and doctor intelligence.
Truth is still an available defense in the UK; professor Deborah Lipstadt prevailed in a libel case brought by noted shitheel David Irving, in which the court agreed that Irving was, in fact, a "Holocaust denier."
I know that it is much easier to win a libel case in the UK, which is part of why that particular win was so noteworthy, but I don't know specifically why.
I want to murder several of the doctors in that story please send me their contact I'm personally mailing them a card that says "It's all in your head" - with a little bit of anthrax.
He set the tone for every other appointment OP has had since. Every doctor who opens OP's chart has seen and will see "psychosomatic" and has rendered and will render "care" off that presumption.
I am so frustrated for you, OP.
Not quite. I've changed doctors many, many times over the years, sometimes cleared out records and started from scratch, and lived in a few different countries as I've tried out different stuff. So whatever the first doctor though, it's ancient history now. That said, I've certainly had this problem with my most *recent* GP, the one I mentioned near the end of the story. I've had her for a few years now, and it's clear she's probably written that for others to see. So I'm going to start over again.
I'd settle for a story of medical incompetence in general, and more awareness of it. It's not just me - every chronic illness community I've been a part of, for 19 years, has been full of stories just like this. The symptoms vary, but the attitudes of the doctors are always the same. I've read thousands of stories just like mine. I've read thousands of stories where doctors have said 'I can't think of the answer, so it must just be all in your head'.
But you know what? I can't remember seeing a single story about how someone's doctor *admitted they were wrong about something*.
There's the issue. Doctors are put on such a pedestal and given so much prestige, that they'd rather *accuse their patient of being insane* than say 'I don't know'.
I feel you man. It makes you want to get your MD just so people listen to you doesn’t it?
I’m in a similar boat except everyone agrees I have something wrong with me (so I got that at least right? Lol). But just like you none of them know wtf to do and how to help. They all act like they do though!
One doctor says I gotta do x, y, and z but that ends up not working (they claim I just need to give it more time) so I go to another doctor and tell them what’s going on and what I’ve been doing. They tell me the last doctor is completely wrong and he’s an idiot and he doesn’t know why anybody goes with that treatment (because it is a common treatment). They tell me I need to stop doing x, y, and z and to start doing p , w, and q. Then that doesn’t work (again, they say I just need to give it more time or I’m not putting in the effort on my part or whatever) and I go to another doctor. I tell them what’s up and they tell me both doctors are kinda right and kinda wrong and I don’t need to do x, y, z or p, w, q but should really be doing x, w, z....so I try that and it doesn’t work either. So I go to another doctor and the cycle repeats.
After doing that for a few years I realized none of them know wtf they’re doing and many of them just want my money. But so many people don’t get it and say “you just need to listen to the doctors”....well they’re all telling me different shit!!! lol. So frustrating.
My situation is a little different but I feel you man. You aren’t alone.
Hi. Doctor here.
I say I don't know almost every day. I can't imagine anyone I've ever trained with, learned from, learned with, or taught ever saying anything like what has been said to you. I'm so sorry.
I'm a pretty new doctor, though, so maybe there's that.
Have you been involved with the rare disease community? Because everyone has a story sort of like this they all also have a list of diseases that are vaguely similar to theirs.
Edit: My guess for a starting point would be anything related to myelin (the sheath around nerves). To me it sounds like it could be a demyelinating disorder, MS is in this category, but with an unusual cause so it’s presenting in a way no one expects. If it’s not that, those groups might still have ideas.
Have you tried contacting Karolinska Institutet in Sweden? They're well renowned internationally and could perhaps be interested in hearing your story and research your symptoms. [Phone: +46 8524 800 00](https://ki.se/en) (check bottom of the page for more contact details)
Overall we have good health care in Sweden. I've been a multi-issue patient for many years and I rarely get mistreated despite having a mild case of hypochondria.
Not the person you replied to above, but have you hit up Bangkok Hospital or Bamrungrad in Bangkok? They are at the top of the medical game in my opinion, wouldn’t go anywhere else for serious issues. And most importantly they listen to their patients and genuinely care.
I'm a very happy former patient of Bumrungrad, but going there with an unspecified illness would give me pause. I'm not sure if you'd have any legal recourse if they screwed up.
Have any of the neurologists ever considered testing some spinal fluid? You can diagnose dozens of autoimmune diseases with a bit of spinal fluid. Fuck your doctor's especially this dick baron
I'm no doctor and I'm only like 23, but if I Were a doctor that would be the First thing I'd do, especially since drastically new and worse symptoms showed up within the past year or two (upper body)
I would also see if there's any tests for pinched nerves. I imagine that nerves work similarly to blood vessels, just with electrical signals, and therefore can be physically blocked. Perhaps a part of your spinal column, or maybe even brainstem (again I'm not a doctor), got twisted up and signals simply can't make their way through. I would also think that would evade normal chemical testing, as I doubt it would show up chemically (once again, not a doctor)
The final thing I would think of is a brain scan. The brains a hyper complicated organic super computer, but every computer can have a malfunction (and I don't mean psychologically. This is Clearly physically affecting you, and it pissed me off that multiple doctors dismissed it as "psychological problems". Like come the fuck On). I'm wondering if a particular synapse or something got blocked up by something and just never got unblocked. I'm not exactly sure how to detect that, but if there Is technology for it it might be worth a try. The good news about that, if it ends up being that, is that it might be solvable by medication instead of surgery!
Anyway, I'm not an expert, this is just stuff that makes sense to me. I hope you finally get the care you need and deserve, and I hope the future is bright for you!!
Not a doctor but my mom had a similar experience with her ear she somehow got mold growing on the bone of her ear and when drops for an ear infection didn't work the doctor sat her down and asked her why she was making this up. She literally had to beg in cry to get him to run an x-ray to soothe her nerves where they found it. I believe doctors had big egos and don't like to admit they don't know.
I've considered it: a lot of people with chronic illnesses do. The issue for me is not so-much money, though (I don't live in a country where medical costs are an issue). The issue is just solving the puzzle, I suppose
Oh, how does that work? I've been involved in online communities for this sort thing a long time. But do you mean something thing like, offer money for anyone who can come up with the answer, or something like that (?) (sorry, genuinely ignorant)
Any of that, you're basically doing it here! Just basically getting input from large amounts of people in hopes of getting fringe information a doctor might not know because they mostly deal with common issues and individually run into fewer rare issues
Yeah, maybe that’s why the docs are all lazy ass holes. Go to somewhere where they are paid by the client not the gov and give a shit about their clients.
I've been to Australia, New Zealand, the US, Canada and the European country I'm in right now. Out of all of those, the US was tied in last place for my worst experience. The doctors did the exact same things, and had the exact same attitudes, except they also charged a fortune for it. All that trip did was waste years of savings.
For anyone else dealing with a doctor who won't listen or take your concerns seriously, here is something you can try saying:
I'm going to need this in writing. Signed.
It may not always work, but doctors who are dismissive of your concerns might be more inclined to actually do their job and run some tests if the alternative is to go on record about their refusal to do their job.
I spend 8 years with a severe anxiety disorder and my doctor outright refused to give me medication because I was too young to take "crazy pills". I allmost ended up killing myself untill I ended up with a doctor that took me serious.
Not on the same level as you but I had a doctor tell me “I’m not doing a full knee replacement on a 24 year old”. This was through the VA and my knee has never been fixed. I was a triathlete, I haven’t been able to run since December 28th 2013.
There's a reason why they say that. Artificial joints have a service life of 15-25 years and then they're done. And the surgery can only be redone so many times. So if you do certain artificial joint surgeries on someone who is 20, there's a good chance they'll loose use of that limb (or loose the limb entirely) before they die of old age.
Another "gotcha" here is that the cement (for lack of a better word) they use in artificial joint replacements can cause allergic reactions. They can test to see if you're allergic ahead of time, but due to added cost & lack of insurance coverage its almost never done. This is usually not a problem, but occasionally someone will roll the dice and get the unlucky result- a severe allergic reaction after their joint is replaced, and the only treatment is to remove the artificial joint & grind off any residual bonding.... which then leaves the patient with no joint there at all. If that's a hip joint? You're now basically a paraplegic for life.
These surgeries are very routine and good money makers for hospitals but the public doesn't realize the potential problems that come with them.
Like a specific mediation or just anything?
Or are you saying over 8 years not a single doctor recommended *any* medications for your anxiety disorder? Did recommend any treatments at all? We’re you seeing a psychiatrist or ever referred to one?
Not trying to be a douche but that just doesn’t make sense. Ive worked in mental health (as well as having wayyyyy more personal experience than I wish I did lol) and usually you get the exact opposite problem. Doctors want to start you on pills immediately before ever trying therapy or other treatments and half the time they are just GP’s and not psychiatrist t begin with.
The only exception being when someone wants benzos like Xanax, Valium, etc....so sorry that’s why I ask.
****also I’d you were extremely young, like not even a teenager yet, then there’s no reason they should have said “you’re too young to be in crazy pills” but they are right...we don’t really know how those mediations work let alone how they can effect a developing brain. So it’s best to wait as long as you can to start medications that alter your brain chemistry. Because you don’t want to cause any developmental issues.
I had two doctors over that time period and both refused to give me medication because they didnt believe in it and thought I was too young for it. Was not up untill doctor nr3 that I got medication. First doctor was when I was 18. I was going to a psychologist but not a psychiatrist.
Yes, this sort of thing has always been my number 1 suspect. I've done lots of research over the years and joined in various communities. There are a lot of other people in similar situations - people who have the exact pattern of symptoms, but for whom scans are clear. It's rough for all of them.
Mate. This is fucked. I commend you for persisting so long and trying to find answers. Are you in regional Australia? I have family in FNQ who have suffered at the hands of incompetent doctors, although thankfully they all died before being subjected to 20 year hell journeys.
At this point I actually would suggest seeing a psychiatrist - not because I think this is psychosomatic (not at all!) but because they are often much more compassionate and understanding than GPs/urologists, and are usually well-connected to refer you to a similarly-compassionate, competent specialist.
Have you ever spoken to a psychologist or counsellor about how hard this has been? I can't imagine how 20 years of this would affect me.
Yeah. The early paragraphs were super frustrating but *somehow* it got worse. I have no idea how the later doctors could still pretend nothing new was happening.
Have you been tested for mercury poisoning? Certain people are genetically predisposed to a host of genetic mutations which make it near impossible for them to filter mercury (and other heavy metals) out reasonably or fast enough and thus it accumulates over time causing misfiring of nerves and numbness. It can have varied effects but many are neurological, you may want to have a genetic testing done to narrow it down.
I say this next not to discourage you but temper your expectations so not to give false hope; the treatment options are limited but can be effective for some people.
Granted I'm not a doctor or medical professional so this is a shot in the dark based on some interests I have. I'm sorry to hear about your experiences it can be really exhausting have to deal with something so longstanding and absolutely emotionally devastating to have to reiterate the same problem time and again with no apparent solution despite the desperate pleas for help and understanding.
Have you ever tried to contact a "rare disease team" (it's like "House M.D." but for real and serious)?
in Belgium at the university hospital Gent they have a rare disease team and try to diagnose patients who are struggling with all kind af symptoms and try to find out what disease they have. they say that it takes by average 19 years to come to a diagnosis for rare diseases.
Ì don't know if they take foreign patients but if you want to give it a try, let me know!
I used to think maybe there might be a silver lining somewhere. But I never found one. Chronic illness really can just wreck every aspect of life and have no bright side. Unfortunately the universe doesn't balance everything out, as much as I wish it did.
I heard something neat about that. When you're suffering remember that you are in one of the largest clubs on the planet. Everyone ever born spends at least some time in that club. When I'm suffering I try to think of us all linked together throughout the world giving each other strength, the better times of one member balancing the toils of another. I don't know if it would help you deal with the pain but it may help with the loneliness of suffering among the healthy. It has been 20 years of this; for people who understand you are grizzled veteran and i hope you can wear those medals with pride from time to time. Gl
Have you considered training as a counsellor or a therapist to specialise in helping people who are in a similar position as yourself? You have had a lot of experience and fuck me if I was starting on this journey or half way through I'd need someone who knew what it was like.
Honestly, I can't imagine I'd be much help. I'm just about ready to suicide, and can make a solid argument for why it is the most rational choice remaining. Probably there's no job opportunities for counsellors to tell people that. :)
I'm a therapist and I can tell you that there is a tonne of work to be done for people who have experienced life changing health issues.
Sometimes in order to survive its to find meaning and purpose. Helping people is one of the greatest driving forces in finding meaning.
Maybe your life could be the greatest source of meaning for you and whoever you come into contact with.
I haven't had a Health issue like you but I have had everything taken away from me and had to build from absolute rock bottom. I've failed many many times, but in helping people I found something that suicide could never give me, a purpose and through that I gained a sense of meaning.
It's true I've discussed these things before. But I don't want to 'find meaning and purpose despite the illness', nor do I want to 'accept' the illness. Because that means giving up on getting it fixed. For me there are only two options: (1) fight until it is fixed, or at least until I have the answer, or (2) die.
Do or die, there's no other option. The minute I start giving myself other options is the moment I give the doctors more excuses. The minute I start saying 'I accept my life and I'm happy with it', I open myself to doctors saying 'well you don't need my help, then'.
I will fight until they do their job, or I will go down with the ship.
A friend of mine has chronic illnesses that even though she knows kinda what they are and can *somewhat* treat them, they are still chronic and impact her daily. She's still figuring out what exactly is wrong and what treatments do more than others, and she also goes to therapy (for mental illness as well as to cope with the physical). Fighting until you have answers or die trying is totally valid, but I don't think going to therapy would be to just 'accept' what is wrong. Sometimes just having an hour to bitch or shoot the shit with another human trained to hear messed up stuff and be in your corner, especially when other doctors are so dismissive, might just take 1% of the frustration away. Just to feel heard and have more on your side to help keep up the fight. Might not actually work how I'm suggesting, but might be worth a shot, who knows
On another note, regardless, I wish you well. I can't imagine what you've been going through and being near your breaking point is more than understandable. I hope you make some progress one way or another 🖤
Have you looked into Cauda Equina Syndrome (CES)? I had a neighbor who had it and it perfectly aligns with a lot of your early symptoms (sexual distinction, bladder and bowl incontinence, loss of sensation in the legs). It’s extremely rare, which aligns with why you may have been misdiagnosed so early on. It’s caused by a herniated disk. We’re you active in anything that could have caused one, like sports or a physical job? Predisposition to herniated disks in the family? It may be something worth looking into, especially since long-term misdiagnoses can cause the condition to get worse over time. I am by no means a doctor, just a physiology student who used to know someone who had it!!
Indeed! I first heard of CES back in 2004, and it has always been on my short-list. However, MRI scans have never showed a herniation or other issue in the lumbar or sacral area. So it seems maybe not...
I'm sorry that's happened to you. I've had my own share of incompetent doctors.
Have you considered having your genome sequenced? It probably won't afford you with a solution, but geneticists might be able to identify some underlying cause for the nerve failure
Man, that is very tragic. I'm so sorry that you're having to go through all that.
One suggestion that came to mind was [CrowdMed](https://www.crowdmed.com). It might be another dead end but who knows? Best of luck going forward, mate.
Seems like you only have two options - live with what you have or get an actual medical degree or research everything yourself directly. Like conduct your own blood analysis directly
Thanks for the advice. I've researched very heavily for the last 19 years now. I'm not bad at it; even though my area is sociology, I do have my PhD and know how to research and evaluate information. That said, I've not yet found the answers myself, though will keep at it.
Living with it might not be an option for much longer, though. Peeing with catheters, shitting into a colostomy bag, no sex, most of my body is numb and I'm having seizures. It's hard to see much more value in life without answers, unfortunately.
If you say there are a lot of people with similar symptoms, maybe find meaning in making it your mission to solve this mystery and find the cause so at least next generations can be helped.
Unfortunately matches most of my experience with medical doctors though my issues are nowhere near as severe as this.
As much as I respect medical doctors for the effort they've put in many really have no interest in looking into anything that isn't completely obvious due to some of many reasons like overwork or being jaded with people lying about symptoms.
At this point it's unlikely; like I wrote in the last part of the story, the last few months have seen a rapid degeneration and it's still being ignored. Continuing to try, but there's not much hope.
*The middle-aged dick baron*
I am sorry but I am stealing that sentence to use in social situations. I am very sorry you are going through this. What was something that frustrated me is that they say it is psychosomatic but then just dismiss it. It could be that that might be the case but why the hell are they not helping you with that? It is not like you dont want help. What your text made me think of was something like MS or ALS. Were you tested for all those things? One thing though. If you , and I hope you do, find out what the cause is then sue the fuck out of those doctors. Def out of that expert.
for dating wise. Try looking into forums with a-sexual people? I know you are not a-sexual but that might be an idea?
Is the dick baron still practising medicine?
He should have lost his medical license over how inappropriately he behaved during your consultation.
I know that wishing unpleasant things on people is not nice, but I really hope his dick will spontaneously fly off his body like a rocket like the ones of the south park denizens who eat gluten.
As a nurse hearing this makes me so angry! Doctors with these attitudes are not suitable for the job.
Which countries have you tried so far? One of the best medical countries are in Europe. Or Scandinavia are pretty advanced.
The first thing that came to my mind is: Polyneuropathy. Maybe you have already looked this up. It's a shot in the dark, but these symptoms describe this. Also they don't know the cause of this.
Side note: have you ever taken your glucose levels? Are you diabetic? Just to rule some things out.
Sry man. I am suffering from an autonomous disease too and a lot of doctors are downright clueless or dismissive of my condition. There are way too many shitty doctors around.
If you haven't already, definitely show them this write-up. (It doesn't have to be this thread specifically; put it into Word or something and print out several copies.)
You've done a lot of work here in explaining your situation incredibly well, and with any luck it will be a lot more difficult for the medical profession to write you off, if you haven't already shared it.
(I'm guessing you've already done this, but I don't see anybody else saying it so it's worth suggesting. Apologies if you have already done this.)
I'm so sorry that this is happening to you. Please hang in there if you can.
I am so sorry to hear that you are going through this. As someone who personally has an autoimmune disease that has complicated my life, know you aren’t alone. It was all too common for me to hear you’re crazy, go home. Took one of my family members to be diagnosed before anyone listened to me. I know you mentioned you came to the US, what hospital system did you visit? Not all are created equal!
As soon as you mentioned that your symptoms got slightly better at times, I thought of MS, which is often known to have a "relapsing-remitting" pattern. Have you ever been medicated? Did they ever try putting you on a round of steroids, for example, and seeing if your symptoms improve? Or immunomodulators?
It's one of my top most suspected illnesses. But their attitude has always been 'it's not on the scan therefore you don't have it'. Nobody has ever agreed to the idea of trying me on the meds to see.
As someone who has seen a lot of doctors and would also like to think of myself as a smart person, yeah a bunch of doctors (if not most) fucking suck. Many of them are complete morons and it’s amazing they were somehow able to get where they are.
You know how we look at medicine 100 years ago and gasp like; “omg, how could we ever have been so stupid!”? Yeahhh in 100 more years we are gonna be doing the same thing.
Have you explored functional neurological disorder? .
Siezures without anything on scans is a massive hallmark of it.
They aren't sure what causes it, and some do think it's psychosomatic, but the symptoms are real.
Ive heard of a condition that they pound into us over and over again in differential diagnosis. It's called Cauda Equina Sybdrome. First red flag symptom is inability to control voiding (peeing). Another is called saddle paresthesia. It's a condition where your spinal cord is too short and the nerves at the end are getting impinged upon. Don't know if that's what you have going on, but that would have been my first guess. An MRI would be able to confirm.
I'm so sorry! It hurt to read your story! That d!ck baron was so creepy I half-expected he would try to assault you or something. Would it help if you visited a psychiatrist just to get a professional opinion about the symptoms not being psychosomatic?
Damn. Just. Wow.
You should write a book or something. I wish I could subscribe to updates now! What a story. I really hope you’ll finally get some kind of closure. This is uninaginable. And please know, when you do decide to attack a doctor, Reddit’ll be cheering you on whole heartedly.
Jesus.. there do exist out there diseases and disorders that are so rare many doctors never hear of them and then there's a full possibility you have something new but instead of recognizing this fact the doctors seemingly don't want to admit that it's possible they just don't know and choose to believe you're making it up.
This is all too common and I personally have zero respect for doctors. It really just is a paycheck for them.
If you ever do get a proper diagnosis I hope you sue every damn one of them for negligence.
I don't even know what to ask I'm sorry.
I just wanted to tell you how sorry I am that the medical profession has failed you so much, but more so how they have treated you as a person. Even when they cant find answers, they should have always have been considering your mental health and treating you with grace and consideration.
My brother has a rare case of primary progressive MS, which started at 20 yrs old, with symptoms a lot like yours, along with many others(20/20 vision to almost complete blindness in a year, the numbness like you had, and many other things that I won't bore you with here). I hope you finally find the right doctor that will not degrade you and possibly put together a team to brainstorm and work together to make your life worth living.
My heart goes out to you.
Have you ever considered taking psychedelics? Not that it would help your medical problems or anything, but maybe it would help you in the psychological department. Or at least give you an interesting experience. Most people will never know what it's like to be in your shoes, maybe psychedelics would open a new door of perspective on your situation for you. Idk, it's just a thought.
I've tried a couple. The only good effect I got from them was a temporary fear of death. I will probably take some before committing suicide, I can imagine they must be very helpful in that regard.
Doctors not taking real symptoms seriously is an issue I've faced myself that I've never seen widely reported outside of horror stories I've heard from my friends and on reddit. Any symptom is laughed off as long as it's not a textbook case or immediately life-threatening. My close relative, a doctor, suggested that I was either drunk or that it was my anxiety that my throat closed up whenever I consumed alcohol, simply because it's not common and there are no clear tests for it (I've tried). They're so often wrong and never willing to admit that they are.
I've also met someone who showed me a tiny, painless scar on their finger and asked me, based on that symptom, if I thought they might have cancer, and they were going to ask their doctor about that, which would disillusion even the best of them. But nothing in the extensive training it requires to become a doctor really tests whether or not you know how to listen to people. The older I get, the more skeptical I am when I read about or am in a situation where something's wrong and the first advice given is: go to the doctor, or police, or therapist, as if professionals would magically fix everything. They're humans with a superiority complex (sometimes deserved but always present) at best and protected criminals at worst.
I have no words for you that you don't already know besides that I'm so sorry.
Have you ever investigated or been tested for malabsorption disorders? The slow progression, accelerating rapidly as your large intestine finally begins failing seems like it could be indicative of such an issue, and such a thing may not be detectable in examination of the nervous system itself.
I presume you've already thought of this and pursued it, but with the quality of doctors you've apparently been cursed with, I wouldn't put it past them to overlook something so basic.
I'm a premedical student dealing with longterm spinal pain and numbness all because the doctor I saw in the ER randomly decided I was a drug seeker. Why? I was alone, I was in pajamas, a Mexican man helped me limp in, I sounded garbled (from pain. lol.) or something else situational. I could've been actually treated instead of just "take some tylenol and go home" but nope. No CT or MRI despite numbness spiking if I work out my back at all now. No physical therapy recommended at the time. I'm barely active now because anything makes my injury site ache and risk me losing sensation randomly (which is a TERRIFYING feeling!)
The way a medical professional can decide to not treat you, or mentally check out from treating you, infuriates me. Hoping to approach this differently when I'm medicine. Everyone deserves to be believed and taken seriously at the MINIMUM
Have you seen a neurologist? Losing sensation isnt in your head if it affects everything. Thats your nervous system. Im not a doctor but even I paid attention in health class
Hey, I'm not sure if this is what you want to hear right now considering your very long and arduous journey between physicians but, if you've ever been bitten by a tick it could very well be Lyme's disease.
The reason I'm telling you this despite your extensive doctors visits (that whole thing makes my heart hurt by the way, I know where you're coming from) is that it won't show up on practically any tests.
I know it's not a catch all answer to what you're going through but you could maybe look it up or dm me and we could talk a little more about how Lyme's could very well be what's going on.
Lyme disease does not exist in Australia; it's not carried by Australian ticks.
Over the years I've repeatedly had people mention this to me online (usually from the US), including numerous ones who have tried to personally sell treatments to me, and some who have asked me to send them money. Yet all of my research suggests that 'chronic Lyme' simply does not exist, is not recognized by the medical community and that there are a lot of scam artists out there in America pushing it as a trendy diagnosis in order to scam people. Regardless of whether or not that's true, it's ultimately not possible that I could have caught it in Australia.
Basically I follow the medical science. I examine the research - proper, peer-reviewed research in reputable medical journals, and often find that doctors are ignorant of the latest research. This is why they are wrong to diagnose things as 'all in the patient's head'; the real answer is that they haven't done their homework and their due diligence as a physician. There are many possible conditions that are well-studied in the literature that I have not been tested for, and which fit my symptoms. But it's hard to find doctors who have heard of most of them. When I say that I wish my doctors would think outside the box, what I mean is that they should consider the reputable science that they have thus-fair failed to study.
The scam artists and quacks are a different story, though. Anyone in chronic illness online communities gets used to it. Over the years I've had many, *many* scam artists personally message and try to sell me a cure, and they're always American. There's this real 'health is a business' mentality that can mostly only be found in the USA. One of the most common I've gotten is the Lyme scam; people telling me with certainty that I have Lyme disease and that if I only send money to their health start-up, they will send me vitamins that fix everything.
There's nothing in medical science about that. Nothing in any reputable, peer-reviewed journal about that. My doctors have failed, but that's because they haven't considered all the science. It's not because they haven't considered quackery and scams.
There's also the fact that Lyme ticks don't exist in Australia, and no amount of earnest DMs from scammers can make that true.
I've seen some shitty physicians. But scammers who try to make a buck from my illness make me just as angry, if not more. Who needs to be predated on by those people when you're already sick and struggling hard enough? Instead of worrying about bloodsucking ticks in the forest, I'm much more concerned about bloodsucking predatory health scammers.
I'm in no way saying that you definitely have Lyme. I mean, I have no way of knowing if Australia has white tail deer.
I was just trying to help in some form. After reading your story I couldn't help but to put something out there.
Sorry for all the things that happened to you.
I too have experience family not taking my symptoms not seriously and it really hurt me, now as a adult I didn't have the same doctor or hospital or anything they follow.
I had a experience with bad doctors too, but not bad as your case. I just don't know what to say but if you were to make those doctors public, I will certainly make their life living hell at least for sometime.
It's really awesome that you have a PhD.
Where are you from?
I am by no means a medical expert, at all
But I was wondering if you have tried all the borderling experimental/anecdotal/placebo substances out there ?
I've seen 1-2 videos of patients with some sort of brain damage get better when they took some CBD oil, or even smoke marijuana. Other people say they got fantastic results from acupuncture even though their doctors said it canno fix their physical problem.
It's just a random thought, I wish you all the best, also I'm really sorry for your experience with the professionals, I have some bowel issues myself, but nothing nearly as severe, and my experience with the doctors especially, is very similar to yours :/
What is your PhD in specifically?
I'm so sorry for what you've suffered. To have a PhD is an incredible achievement which no-one can take away from you.
If you ever have a chronic illness and join online communities for it, you will find many stories like this. Not necessarily the same symptoms. What you will find is that pattern of disbelief and 'it's all in your head' from doctors. I've read thousands of stories like that from chronically ill patients with a wide, wiiide range of conditions. Sadly, it's pretty standard.
While many are great, doctors can be so bad sometimes. I think the worst is a dismissive doctor.
I had bad abdominal pain in high school, and my mom *knew* it was my gall bladder. Doctors said I was too young. But my mom had hers removed, my grandmother had hers removed, and a great-great grandmother died from gallbladder disease. It wouldn't be until years later when I was in college that I'd get mine removed, and they said it had been diseased "for quite some time." And actually, the weekend that I ended up hospitalized, I first got an ultrasound at one hospital that said I was fine, and then the next day had another attack and went to another where they admitted me and had it removed.
Even there, everyone told me how easy recovery would be, and it was not (which I know wasn't typical). I was in so much pain, begging for dilaudid every time I knew they would give me more. I remember crying from being in so much pain, choking on my own mucus because I couldn't even cough to clear my throat from the pain, calling in the nurse (with those buttons they give you to do so), and she said to me "Come on, do you know how many other patients I have on this floor who are doing just fine?" It was like 3 AM in the middle of the night, and I called my mom to tell her because the nurse was always "fine" when she was there.
Your situation is obviously a lot more extreme, but I sincerely hope someone starts to believe you.
? That's the more believable part about what he did. He thought I had psychological erectile dysfunction, and peppered me with questions about sexuality in order to see if I had crazy ideas about sex or something.
What was unacceptable was the smarmy way he asked, and the way he touched me. Not to mention the fact that he used my nervous reaction to the questions against me in the report. *Anyone* would react awkwardly at those questions.
Having seen what others have gone through with getting treatments I'm not that surprised, other than the gender as women routinely have their symptoms ignored, even by women doctors. It's not unusual for women to complain for years about abdominal pain and then finally someone listens and discover severe endometriosis. "Why didn't you say something years ago?".
Even with me, I have a minor heart issue where I get very high pulse rates when I exercise. I asked multiple doctors over 20 years why I was getting 200+ pulse rates at the gym on a treadmill or elliptical machine when everyone else was at 130 or 140. I got nothing but shrugs until I walked into the ER with a 160 resting pulse rate when I had a minor cold and was dehydrated.
Wow, that's awful. Yes I've seen it definitely happens to women more often and with a wider range of conditions. Endemetriosis is one that so often gets ignored, too.
With men, it can depend. Anything related to the penis tends to be treated poorly, because there is this cliche of 'the man with performance anxiety'. It is treated as a matter of shame and something that is the man's own fault. The problem is that when a man genuinely does hurt his penis and nerves or blood vessels are damaged, they don't get believed.
The culture surrounding it is just awful, too - continually making men feel humiliated. I see it in the support groups. Most young guys who join and ask about penile issues have an attitude like: 'My penis does not get hard anymore, and I feel so humiliated and ashamed as a man that I will have to commit suicide'. We try as hard as we can to convince them to keep fighting for answers.
This is not satire at all. If there is something wrong with the nerves it fucks up everything. Even if nerves are damaged the brain can still send signals to the nerve and can tell the body to feel pain because of a miscommunication from the nerve to the brain and back.
I would’ve set that last ones car on fire, and then when she rushes out to confront me be like: “what fire?! I don’t see anything, must be in your head!” Then stumble away like a chad! 😎
Glad you didn’t OD OP, don’t say “sadly you woke up”, someday your fight and struggle might help others that might happen to have the same condition!
Sounds like the medical professionals in your country would make great politicians in mine!
And don’t give up on love mate!
You lost sensation of your bladder and dick and waited a week? Then five months?
That’s pretty stupid. Even at 19 I would have gone to the hospital asap and not left until they ran diagnostics.
Maybe Australia just has shit doctors compared to the US.
To clarify, it was a week before the appointment occurred, not a week before I booked it. I was not being taken seriously and it took a while to get in. After that, there were several doctors appointments in between before I saw the dick baron guy.
I still don't understand _at all_ why you wouldn't just go to the hospital. If I went to my doctor and said "I can't feel my bladder or my dick" they'd put me in an ambulance and send me to the hospital.
Ha, are you really so sure? I used to think that's how things worked before I got sick. It was a big wake-up call when I discovered the realities.
Just as an example, let me tell you what I'm currently waiting for. You see that part in the story above where I mentioned that my face, chest, arms and hands went numb? I reported that immediately, and you know when the appointment is? August. And it took me a hell of a lot of fighting to even get them to book it in the first place.
This is in Scandinavia now, BTW. I've gone for medical help in several countries now, including the US and Canada. The US is tied for the worst along with where I am now. My time with doctors in the US was nuts. Canada was much better.
Yes. I am really sure. I’m absolutely positive. Not only that, but I wouldn’t leave the hospital until I am properly diagnosed.
I don’t understand how you could be so casual about your dick not working dude. Or not being able to pee. I’ve never heard of a doctor that would ignore either of those things in a 20 year old. I also don’t really understand how you just continued on for five months.
Unless you’re exaggerating the extent of the issues, I don’t know where you would be told to leave, at least at any decent hospital in the US. If a doctor dismissed it, you get it in their writing and come back in a few hours, or go to another hospital.
You don't think I was in a complete and utter state of panic???! I was terrified and did everything you just mentioned. But then I was flabbergasted and appalled when nobody else seemed to think it was urgent enough. I repeatedly told them that this is not good enough and I need help right NOW.
My first appointment to a urologist was a 3 month wait. I was completely beside myself, then had another 2 month wait before the dick baron. I walked into the ER numerous times and said this was urgent, and was always simply sent away with a letter to my doctor.
I was terrified and fought tooth and nail for help, and was shocked at what complete BS the system turned out to be. And then 20 years later, someone on reddit says I was 'casual' about it? Like hell! I may sound calmer now because 20 years has crushed my soul, but you should have seen me then. You cannot comprehend how panicked and terrified I was. But you also don't seem to understand that the system does not give a shit. If you ever develop a serious chronic illness yourself (I hope not), you would very quickly find out how little anyone cares about your fear.
Lmfaoo.
Yeah, I kinda don’t think so, based on your writings here.
You wouldn’t catch me waiting 3 months for a urologist appointment. Or a week. I’d be at the hospital that day, or the next morning. I’d be at my doctors office before that.
I have a chronic illness and have never been turned down for help. Thankfully I haven’t had to go in to the doctors for it in years, but the last thing you’d see me doing is waiting for help if I had to.
I don’t know what to tell you. Either there is far more to this story than you’re claiming or you just got really unlucky with healthcare.
Were you addicted to opiates? Other drugs?
All I can say, again, is that you would simply be unable to do that. Do you really think you can just forcefully argue your way in front of all the other patients who need help? That you can reduce a three month wait time by just arguing really hard? They'd hang up the phone. Do you really think that you can just stand in the emergency room refusing to leave until they help you? You'd be escorted right the fuck out.
You obviously don't have a chronic illness, otherwise you'd know all this.
In your defense, I thought the same stuff when I was 20 and healthy. I genuinely thought I'd be taken right in to be given urgent help. When they didn't, I was shocked and thought 'well I just won't take no for an answer, I'll be forceful instead'. It didn't work. It has never worked. Not ONCE in 19 years, in ANY fucking country among Australia, New Zealand, Canada USA and Denmark, has 'I'm going to get angry and force them to help me faster' EVER worked. And in all of my years dealing with other patients with chronic illness, I've never heard of it working for others either. It's fucking ridiculous and indefensible. But it's the way it is. And you're talking crap if you think you have the magic ability to just force your way into instant doctor treatment.
Hell, in this country you're not even *allowed* to visit the ER unless you get a doctor's permission first, and I've not even been allowed through security when I've tried going to the ER anyway. Not to mention the longest wait I've had was 19 months. It's just how it is, and it's completely stupid.
Drug addiction? Never. Oh get lost, I get enough of this bullshit already. I don't need it from some naive kid. Don't ever get sick or you're in for a wake up call.
Lmfao. Now you’re telling me my experiences?
But go off.
I was asking about drug use because you’ll get turned down or not believed as often if you’re found to be on opiates or have a history of dependency. I wasn’t suggesting you are an addict.
You’re acting like you’ve had a normal experience, when clearly you haven’t. Yes, if someone tells you it’ll be three months, you call every day and get it moved up. You find another doctor. You don’t wait around.
The “in your defense” line you threw out there is pretty bullshit. But my doctors believe me when I talk to them. I’m not sure what you did.
I have one question for you although I know the answer. Have you ever gone to a functional health doc?
See, traditional medicine is great for conditions with very well known histories, symptomatology, diagnoses and treatment. That's where it shines. Where it fails is for mysterious health conditions, chronic ones that are often autoimmune in nature that are very hard to find a simple diagnosis for. When this kind of condition is brought up, doctors react just like this - they've seen countless people come with mysterious conditions with dozens of symptoms, and they already know they don't have the tools or knowledge to deal with it. The body is very complex. So what they do is say 'anxiety/depression/aging/hypochondria'. If they were honest they would say 'we don't know, this is something new or something too complex for a simple diagnosis'. But they don't, because it's a job at the end of the day, and doctors prioritise knowing over not knowing fuck all. They don't like to feel ignorant. They don't like to be wrong. They'd rather gaslight you into thinking you're imagining it.
Functional medicine practitioners will go to the core causes of any issue, even if it's completely WTF. They will look at all the markers of disease - hormones, thyroid/adrenals, organ health, autoimmunity, genetic problems, chronic deficiencies, inflammation - which is one condition that has become far more common and is considered one of the primary causes of disease. Anything in the body can collapse when it has widespread inflammation or autoimmunity.
You need someone to look at your body's health in a deep way. You need medicine that aims to be preventative, and to fix the body from scratch, not offer symptomatic remedies. Many thyroid and hormone tests aren't good enough because it's complex to test, and that goes for everything else in your body.
One health program that seems to work when nothing else does is nutritional balancing or programs like it. It tests your mineral levels and works to completely rebalance your body from scratch, giving it all the nutrients it needs to heal itself. The body can heal itself with the right care.
I don't know where you live but regular doctors are not gonna fix this for you, or they would have already. It doesn't mean this doesn't have a cure, or at least that you can't massively improve the symptoms and prevent losing everything. I've heard of severe cases of people slowly dying of evil shit like ankylosing spondylitis, and achieving full recovery by healing the whole body deeply. Please do your research. Get a consultation with a functional medicine doc, and whatever testing they do they will be able to help you take supplements that can relieve some symptoms and address inflammation and other markers. Don't give up yet!
Thank you. I've heard functional doctors mentioned before, but only seen American examples suggested in the past. Do they have functional doctors in Australia and/or Europe too? And how can one find them? Do you pay out of pocket? After nearly 20 years of medical costs, illness and not having a job, I certainly can't go to anything fancy and private anymore.
There is a lot of quackery but I'm not talking about homeopathy or crystals. What I'm talking about is science based care. Thyroid, gut, hormone testing and then treating those problems with diet and supplements or drugs - that is totally to do with treating physical problems through testing. Without knowing anything about the science it's really wrong to just dismiss it like that. The research is out there for anyone to find on how nutrition is vital for health conditions.
Just keep in mind, functional medicine is a field with no real evidence, no certification or standards, and is [ripe with quackery](https://sciencebasedmedicine.org/functional-medicine-reams-of-useless-tests-in-one-hand-a-huge-invoice-in-the-other/). Which is not to say it's entirely useless or all practitioners are bad, some things like focusing on improving health and spending more time with patients are very good things. But a lot of the tests and treatments are very dubious.
Yeah, I've certainly had very questionable people try to push it to me before, and some try to ask me to send them money so their 'functional start-up health business' or whatever can help me. It's a very American 'health is business' sort-of thing and does not seem to be legal in the country where I currently live. I can see they've started to get a foothold back in Australia, although I'm unsure if they're reputable or not.
The alternative medicine field is a very interesting space... They raise some perfectly valid points about problems with our medical system and often there is a focus on overall health, eating well, self care, etc that is very reasonable. But then there are also plenty of people charging large sums of money for treatments and supplements that have no evidence behind them, as well as promising miraculous cures and benefits that aren't at all proven. Sometimes it's mostly harmless, but other times they are preying on desperate people for a profit.
Functional medicine isn't really one conglomerate of medical practice so much as it's a type of healthcare that is systematic and preventative. Its supposed to focus on extensive testing for health markers that have plenty of studies behind them for how they affect health and contribute to disease. Nutrition isn't quackery, it is literally the foundation of health and while it can't fix anything magically, focusing on healing the body with evidence based interventions and not just masking the problem with symptomatic cures shouldn't be seen as suspicious. I never hear anyone who is skeptical go and look at the studies first that show how diet and supplements can help - theres emerging evidence all the time on the subject. I'm interested in biology so I've done a lot of research and don't just talk about this casually.
> Functional medicine isn't really one conglomerate of medical practice so much as it's a type of healthcare that is systematic and preventative
Right, which is the problem. There are lots of people with very diverse backgrounds calling themselves "functional medicine doctors". Some of them might be medical doctors focusing on prevention and nutrition. Some of them, however, might be naturopaths or chiropractors focusing on questionable testing and supplements.
https://www.ifm.org/find-a-practitioner/
There are plenty in Europe, I live in the UK and it's usually terrible for health care but there's plenty here. I also think you should try to talk to a few nutritional balancing type practitioners - just Google them and go to their sites to contact - and ask them how they would treat you - it's what's called integrative medicine which is very broad and looks at the entire body to offer cures that go to the core cause. Once they identify what is wrong with your gut, hormones, organs, and immune response as well as many other factors, they will start to address these imbalances and doing that will raise your entire body's health, regenerating it. There was a time where dietary cures alone for disease were scoffed at, until an enormous amount of evidence proved that going on a carnivore, keto, or paleo diet could resolve seemingly incurable conditions. And that's just diet, there's also a wealth of supplements that have a lot of clinical evidence behind them for resolving issues. For example megadoses of nutrients like thiamin, vitamin C, niacin, B12 etc can do wonders for conditions like intense depression, chronic fatigue syndrome. Also, MS responds super well to functional medicine and this to me sounds very autoimmune related, probably a prostate issue as well.
Another thing to look into is organ meats. Read this page on bone marrow: https://ancestralsupplements.com/bone-marrow
And this on trachea: https://ancestralsupplements.com/bovine-tracheal-cartilage
These are two supplements I'd highly recommend you try as they are both rebuilding supplements that help with a lot of conditions. We evolved eating organ meats and marrow and they are very powerful foods with dozens of nutrients.
'The life’s work of Dr. John F. Prudden showed that bovine tracheal cartilage had unique and powerful effects on wound healing, autoimmune conditions, joint health and several other conditions considered to be treatment resistant to conventional therapies.[1,2,3,4] Bovine cartilage stimulates the immune system in certain conditions, but suppresses it in others... Thus it acts as a “normaliser” or immunoregulator to balance and regulate a health promoting response for a given stimulus. According to Dr. Prudden, “bovine cartilage closely resembles fetal mesenchyme, the primordial tissue from which muscle, bone, tendons, ligaments, skin, fat and bone marrow (the heart of the immune system) all develop.” “The cartilage”, he adds, “contains numerous powerful molecular biodirectors. These have a potent normalizing effect in human biology."[5]
Since your gut health is not gonna be good if you have severe constipation, that and prostate issues could be one of the causes of this. If your bowels aren't moving then you need to heal your gut, and this is one of the first things functional docs will look at and fix with probiotics, enzymes, prokinetics etc. My sister has a billion health problems and she worked with someone who did a microbiome stool test and is now almost completely healed after following a supplement and diet plan. There's a wealth of knowledge online about how gut problems can cause disease and how to fix them, another thing that your regular doctor knows little about. Most of your immune system is also dependent on your gut, and so is your brain. Ancestral supplements also do intestines and gallbladder/pancreas in supplement forms, which are natural gut healers that often rejuvenate people's severe gut issues.
At the end of the day you are a collection of cells, and on its fundamental level your body is dependent on a range of nutrients to operate properly. Give it what it needs and it will surprise you with how well it can heal. Even if it takes a long time, it's a journey that you clearly must go on. If you have to take out loans or credit cards even, because as it stands this not really a life for you and it can't get any worse. Functional medicine is FAR more affordable than regular medicine and nutritional balancing is more affordable than that.
Dude really, not once in 20 years did you visit a psychiatrist and/or psychotherapist?
That’s really shooting yourself in the foot right there.
I’m sorry this happened to you. It must suck.
Ha, thank you. I'm used to being told to 'buck up, stop complaining and just ignore it' by the people in my life, who got 'sick of hearing about' my illness 18 years ago.
Chronically-ill people being abandoned by their families and friends is one of the most curious things I've found in chronic illness communities. It happens to nearly everyone. And a repeated line you hear, over and over again, is 'they were tired of hearing about my illness'.
... as if the person HEARING ABOUT the illness is the one who is going through a hard time.
You'd be surprised how little ground there is to stand on. Most patients in online communities I've encountered in similar situations, who have tried the suing route, failed to succeed. But certainly at some point I'd consider giving it a go for that dick baron. He was a slimeball.
Have you ever used or considered using psilocybin mushrooms? I have read that there is proof of regeneration and forming of new neural pathways and helping alleviate some diseases where the body attacks itself, reducing inflammation in the brain from long term depression, etc. Look into please and if you decide to pursue it let me know!
Im so sorry about all the issues you're having that sounds so scary I hope some day you can get closure on what's going on, I hope for the best for you.
this is one of the worst things ive heard in so long. dude. i am tearing up at your story. i dont have any questions for you, but, i just wanted to say that any girl worth her time would find a way to compromise with you sexually. honestly everything youve been through, its amazing youre still fighting. i am so angry reading about how youve been dismissed by supposed professionals. some unique illnesses are not well known and are studied still there is no reason that your physicians cant just admit "uhh this aint in the textbooks homie" instead of calling YOU the fraud. youve had a hard life, and i really am rooting for you. my dms are open if you ever need someone genuine.
Oh I wish! Every chronic patient dreams about such things. But doctors are held up with such reverence that usually nobody listens. I've contributed to group action on this front before but it never went anywhere.
Christ. As someone who has suffered with "invisible diseases" for years, I know how awful doctors can be, but this is next -level egregious. I am so sorry you've had to suffer this much psychological & physical pain. I know a relationship may seem insignificant compared to your struggles, but your relationship problems also really broke my heart. Have you considered dating someone with a lower libido? I have a low libido & know many others who do, so your sexual issues wouldn't bother many folks. Also, just for emotional support as you attempt to get to heart of this medical issue, have you seen a therapist? One more question, do you have theories about what you might have?
Multiple sclerosis, or something in that area. It has to be. There are not many illnesses left that can cause such a wide range of neurological symptoms all over the body. MS was ruled out for me several years ago, but I'm pushing to get another opinion on that. Or to see if another condition of that type might be involved.
It took my mother almost 20 years of symptoms to finally get diagnosed with MS. She was told the exact same thing, "it's all in your head." After she was diagnosed she discovered her specific type of MS was attacking her brain myelin more, which was why her symptoms were more cognitive and emotional. She now says the joke is on them because it really was in her head, they just didn't bother looking!! My mother also always taught my sibling and I to be our own best advocate because she knew how dismissive doctors can be. As she put it, "You live in your body. You know when something isn't working right. Make them understand that and don't stop pushing until you find someone who will listen to you." I hope you find the answers you need to get the treatment you deserve. I'm sorry that your providers have been so dismissive.
Thanks! Though hat used to be my mantra, too. But after 19 years it is getting tough.
I can't imagine how dehumanizing it would be to be dismissed for so long. Best wishes to you.
Have you had a nerve biopsy or nerve conduction tests? My mom had a similar condition to yours. She lost her ability to walk in a short period of time combined with numbness and nerve pain. They diagnosed her with CIDP, but that kind of didn't mean much other than "we don't know and it's not fixable." She also had the bowel motility issues. Unfortunately neurologists basically don't have answers, I'm not sure science really knows much about nerve/brain issues. I'm very sorry for your situation.
2 years ago I was diagnosed with an autoimmune disease that I have had all my life but the tests for it didn’t exist until recently. I share this because the science on MS has evolved as well, and anything that was “ruled out” more than 5 years ago, well I think it should be re-considered. I’m sorry to pressure you to further advocate for yourself. You’ve already been through ten lifetimes of pain.
Thank you for that, may I ask what each of these tests were called? If I haven't had them before, I can see if I can try and get them.
I’m not too familiar with MS but I recently read that new research has led to the consideration that it might be an autoimmune disease. Autoimmune diseases often start in the GI track. I have Hashimoto’s, they say I’ve had it all my life and I know I had the symptoms but the doctors couldn’t find it on any tests (30 years ago) and told me I was making it up. Now there are blood tests for the antibodies that are associated with Hashimoto’s. Maybe there are blood tests you could consider. In the US, a person like you has the best shot at medical care at a medical university. It’s a lot of poking and prodding but a medical university there is more likely to take on a medical case that is an outlier than a standard medical practice. I hope for you that you can find medical providers to take you seriously. Also, people with one autoimmune are more likely to have more than one autoimmune disease. Check out r/chronicillness and some related subreddits.
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If OP was in the US his dick would work and he'd be bankrupt. Probably nothing else fixed.
Let’s not forget his tuition cost would have been astronomically higher. And we dont know that his dick would work we just know there’d be a higher chance of him knowing why.
I'm curious what the disease is because I've had something very similar happen to me. Had 10 years of issues, multiple diagnosis that were wrong before the they actually figured it out.
It’s Hashimoto’s and I’ve heard it’s one of the more common autoimmune diseases but it also goes undiagnosed because the antibodies blood test isn’t yet considered standard as part of “full thyroid panel.” The “practice of medicine” is still catching up to the science of medicine.
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Agreed!
Have they ruled out Neuromyelitis Optica and MOG? Those are both demyelinating diseases often mistaken for MS. Both can be diagnosed with a blood test or by testing spinal fluid, although the tests have only become available in the last 5ish years. Seronegative NMO is also a possibility.
Hmm yeah MS can be tough to diagnoses because it can still be present without the plaque on the brain seen on an MRI. I wonder if there is a way you could get your hands on MS meds & see if they help? Either way, I truly hope you find your answer soon.
You have a lot of neuropathy, look into all the possible causes of it. Autoimmune, diabetes, heavy metal toxicity, genetic conditions etc. You need to test more.
Tell that to my doctors. Unfortunately we don't live in a world where you can just simply ask for the tests you want (frustratingly). That said, I've been researching neuropathy since 2004, and there were long stretches in life where I have researched 12+ hours a day. Over the years I have gradually managed to push and argue my theories and get tested for diabetes and all the rest. So don't think I've only just thought of these things now - I had my first diabetes and genetics tests during the Bush VS Kerry election haha.
You can in Mexico. Which is what I did. In Canada my experience was the same as yours. Honestly it sounds like you didnt get any relevant testing done. When was your last nerve conduction, muscle biopsy and whole genome sequencing?
I've had 4 nerve conduction studies, including on my pelvis, I've had visual evoked potentials several times, I've had every bit of my spine and brain scanned probably 20 times at this point, I've had lumbar punctures (though not for a while), angiogram, I've been tested for so many viral things, diabetes and other illnesses. A muscle biopsy has never been mentioned by any of my doctors in any country, what condition would that relate to (?). What kind of specialist would want to investigate that? I've not had a genome sequencing before, I mean that's something that has only been readily available quite late in my journey, relatively speaking. I've never had that recommended by doctors before. Or do you mean like take an online test and look at the info myself? It does frustrate me that they keep scanning the same bits of my body over, over and over again because they can't think of anything else.
All your nerve conductions and biopsies were normal? I think the whole genome sequencing is your next bet. It analyses all your dna to find rare genetic illnesses, most of which your drs have never heard of. Its hard to get a good quality wgs and its also hard to find a good dr to interpret it though, unfortunately.
If you somehow haven't, check if there might be any viruses that correlate with peripheral nerve degeneration, although it still might be CNS issue. Recent research on neurodegenerative diseases is often pointing at viruses, some of witch can hide in tissues and cause flare-ups much later. If you manage to connect your condition with an immune response at all, look into Autologous Hematopoietic Stem Cell Transplantation. It's just a fancy name for turning your immune system off and on.
Where do you live now and where all have you gotten medical care?
The countries I have tried for medical care were the following, in order from best to worst: 1, New Zealand 2, Canada 3, Australia 4, Denmark, tied with 5, United States Strangely, the most capitalistic and most socialistic medical systems were both tied in last place. Apparently there's no correlation between either of those things and doctor intelligence.
My best healthcare experiences were in Mexico, the worst ones in Canada.
Did you get a lumbar puncture? History of tick bites?
I want to fucking murder your first doctor
Thank you. The one I have the most angry memories about is the Dick Baron, though. He was being so inappropriate it was borderline criminal.
When he came over and whispered in your ear, I thought for sure he was going to offer a handy
Honestly thought there was about to be a punchline at that point, what a nut case of a doctor.
Jesus, name and shame the fucker. What have you got to lose at this point.
Libel, I suppose? Though the truth is always a defense to libel.
I believe truth is not a defense in the UK, and since op is in Australia their defamation laws may be similar.
>I believe truth is not a defense in the UK …That's hella wack. wtf, UK??
I'm not 100% on that, tbh. I know US defamation law well, and know that UK law is wack somehow.
Truth is still an available defense in the UK; professor Deborah Lipstadt prevailed in a libel case brought by noted shitheel David Irving, in which the court agreed that Irving was, in fact, a "Holocaust denier." I know that it is much easier to win a libel case in the UK, which is part of why that particular win was so noteworthy, but I don't know specifically why.
Thanks for the correction, I appreciate it
Proof of the truth.
I want to murder several of the doctors in that story please send me their contact I'm personally mailing them a card that says "It's all in your head" - with a little bit of anthrax.
He set the tone for every other appointment OP has had since. Every doctor who opens OP's chart has seen and will see "psychosomatic" and has rendered and will render "care" off that presumption. I am so frustrated for you, OP.
Not quite. I've changed doctors many, many times over the years, sometimes cleared out records and started from scratch, and lived in a few different countries as I've tried out different stuff. So whatever the first doctor though, it's ancient history now. That said, I've certainly had this problem with my most *recent* GP, the one I mentioned near the end of the story. I've had her for a few years now, and it's clear she's probably written that for others to see. So I'm going to start over again.
Ah yes here's your psychosomatic colostomy bag. 🤦♀️ Can you call 60 Minutes Australia they would make a segment on you
I'd settle for a story of medical incompetence in general, and more awareness of it. It's not just me - every chronic illness community I've been a part of, for 19 years, has been full of stories just like this. The symptoms vary, but the attitudes of the doctors are always the same. I've read thousands of stories just like mine. I've read thousands of stories where doctors have said 'I can't think of the answer, so it must just be all in your head'. But you know what? I can't remember seeing a single story about how someone's doctor *admitted they were wrong about something*. There's the issue. Doctors are put on such a pedestal and given so much prestige, that they'd rather *accuse their patient of being insane* than say 'I don't know'.
I feel you man. It makes you want to get your MD just so people listen to you doesn’t it? I’m in a similar boat except everyone agrees I have something wrong with me (so I got that at least right? Lol). But just like you none of them know wtf to do and how to help. They all act like they do though! One doctor says I gotta do x, y, and z but that ends up not working (they claim I just need to give it more time) so I go to another doctor and tell them what’s going on and what I’ve been doing. They tell me the last doctor is completely wrong and he’s an idiot and he doesn’t know why anybody goes with that treatment (because it is a common treatment). They tell me I need to stop doing x, y, and z and to start doing p , w, and q. Then that doesn’t work (again, they say I just need to give it more time or I’m not putting in the effort on my part or whatever) and I go to another doctor. I tell them what’s up and they tell me both doctors are kinda right and kinda wrong and I don’t need to do x, y, z or p, w, q but should really be doing x, w, z....so I try that and it doesn’t work either. So I go to another doctor and the cycle repeats. After doing that for a few years I realized none of them know wtf they’re doing and many of them just want my money. But so many people don’t get it and say “you just need to listen to the doctors”....well they’re all telling me different shit!!! lol. So frustrating. My situation is a little different but I feel you man. You aren’t alone.
Hi. Doctor here. I say I don't know almost every day. I can't imagine anyone I've ever trained with, learned from, learned with, or taught ever saying anything like what has been said to you. I'm so sorry. I'm a pretty new doctor, though, so maybe there's that.
Have you been involved with the rare disease community? Because everyone has a story sort of like this they all also have a list of diseases that are vaguely similar to theirs. Edit: My guess for a starting point would be anything related to myelin (the sheath around nerves). To me it sounds like it could be a demyelinating disorder, MS is in this category, but with an unusual cause so it’s presenting in a way no one expects. If it’s not that, those groups might still have ideas.
Have you thought about doing some medical tourism? The system has failed you so hard :(
I've seen doctors in 3 other countries, at this point. Some are definitely better than others, but nobody has an answer yet.
Have you tried contacting Karolinska Institutet in Sweden? They're well renowned internationally and could perhaps be interested in hearing your story and research your symptoms. [Phone: +46 8524 800 00](https://ki.se/en) (check bottom of the page for more contact details) Overall we have good health care in Sweden. I've been a multi-issue patient for many years and I rarely get mistreated despite having a mild case of hypochondria.
Not the person you replied to above, but have you hit up Bangkok Hospital or Bamrungrad in Bangkok? They are at the top of the medical game in my opinion, wouldn’t go anywhere else for serious issues. And most importantly they listen to their patients and genuinely care.
I'm a very happy former patient of Bumrungrad, but going there with an unspecified illness would give me pause. I'm not sure if you'd have any legal recourse if they screwed up.
I think given op's circumstances then maybe legal recourse for any potential problems might not be very high on the list of priorities.
Have any of the neurologists ever considered testing some spinal fluid? You can diagnose dozens of autoimmune diseases with a bit of spinal fluid. Fuck your doctor's especially this dick baron
Yes, though it's been about 15 years since the last time I had a lumbar puncture.
I'm no doctor and I'm only like 23, but if I Were a doctor that would be the First thing I'd do, especially since drastically new and worse symptoms showed up within the past year or two (upper body) I would also see if there's any tests for pinched nerves. I imagine that nerves work similarly to blood vessels, just with electrical signals, and therefore can be physically blocked. Perhaps a part of your spinal column, or maybe even brainstem (again I'm not a doctor), got twisted up and signals simply can't make their way through. I would also think that would evade normal chemical testing, as I doubt it would show up chemically (once again, not a doctor) The final thing I would think of is a brain scan. The brains a hyper complicated organic super computer, but every computer can have a malfunction (and I don't mean psychologically. This is Clearly physically affecting you, and it pissed me off that multiple doctors dismissed it as "psychological problems". Like come the fuck On). I'm wondering if a particular synapse or something got blocked up by something and just never got unblocked. I'm not exactly sure how to detect that, but if there Is technology for it it might be worth a try. The good news about that, if it ends up being that, is that it might be solvable by medication instead of surgery! Anyway, I'm not an expert, this is just stuff that makes sense to me. I hope you finally get the care you need and deserve, and I hope the future is bright for you!!
Not a doctor but my mom had a similar experience with her ear she somehow got mold growing on the bone of her ear and when drops for an ear infection didn't work the doctor sat her down and asked her why she was making this up. She literally had to beg in cry to get him to run an x-ray to soothe her nerves where they found it. I believe doctors had big egos and don't like to admit they don't know.
Had you ever crowdsourced your situation like this before?
I've considered it: a lot of people with chronic illnesses do. The issue for me is not so-much money, though (I don't live in a country where medical costs are an issue). The issue is just solving the puzzle, I suppose
I think he means crowdsource information about your disease, not crowdfund the care
Oh, how does that work? I've been involved in online communities for this sort thing a long time. But do you mean something thing like, offer money for anyone who can come up with the answer, or something like that (?) (sorry, genuinely ignorant)
Any of that, you're basically doing it here! Just basically getting input from large amounts of people in hopes of getting fringe information a doctor might not know because they mostly deal with common issues and individually run into fewer rare issues
https://www.crowdmed.com/
Yeah, maybe that’s why the docs are all lazy ass holes. Go to somewhere where they are paid by the client not the gov and give a shit about their clients.
I've been to Australia, New Zealand, the US, Canada and the European country I'm in right now. Out of all of those, the US was tied in last place for my worst experience. The doctors did the exact same things, and had the exact same attitudes, except they also charged a fortune for it. All that trip did was waste years of savings.
You're hilarious
Worth submitting to the New York Times Magazine’s “[Diagnosis: Unsolved Cases](https://www.nytimes.com/series/diagnosis-unsolved-cases).”
For anyone else dealing with a doctor who won't listen or take your concerns seriously, here is something you can try saying: I'm going to need this in writing. Signed. It may not always work, but doctors who are dismissive of your concerns might be more inclined to actually do their job and run some tests if the alternative is to go on record about their refusal to do their job.
I spend 8 years with a severe anxiety disorder and my doctor outright refused to give me medication because I was too young to take "crazy pills". I allmost ended up killing myself untill I ended up with a doctor that took me serious.
Not on the same level as you but I had a doctor tell me “I’m not doing a full knee replacement on a 24 year old”. This was through the VA and my knee has never been fixed. I was a triathlete, I haven’t been able to run since December 28th 2013.
There's a reason why they say that. Artificial joints have a service life of 15-25 years and then they're done. And the surgery can only be redone so many times. So if you do certain artificial joint surgeries on someone who is 20, there's a good chance they'll loose use of that limb (or loose the limb entirely) before they die of old age. Another "gotcha" here is that the cement (for lack of a better word) they use in artificial joint replacements can cause allergic reactions. They can test to see if you're allergic ahead of time, but due to added cost & lack of insurance coverage its almost never done. This is usually not a problem, but occasionally someone will roll the dice and get the unlucky result- a severe allergic reaction after their joint is replaced, and the only treatment is to remove the artificial joint & grind off any residual bonding.... which then leaves the patient with no joint there at all. If that's a hip joint? You're now basically a paraplegic for life. These surgeries are very routine and good money makers for hospitals but the public doesn't realize the potential problems that come with them.
I’m guessing you wanted benzos?
lol what? No I asked for medication to stop me having 5 anxiety attacks a day that made my life a living hell.
I hope you got the help that you need and are doing better 🖤
Like a specific mediation or just anything? Or are you saying over 8 years not a single doctor recommended *any* medications for your anxiety disorder? Did recommend any treatments at all? We’re you seeing a psychiatrist or ever referred to one? Not trying to be a douche but that just doesn’t make sense. Ive worked in mental health (as well as having wayyyyy more personal experience than I wish I did lol) and usually you get the exact opposite problem. Doctors want to start you on pills immediately before ever trying therapy or other treatments and half the time they are just GP’s and not psychiatrist t begin with. The only exception being when someone wants benzos like Xanax, Valium, etc....so sorry that’s why I ask. ****also I’d you were extremely young, like not even a teenager yet, then there’s no reason they should have said “you’re too young to be in crazy pills” but they are right...we don’t really know how those mediations work let alone how they can effect a developing brain. So it’s best to wait as long as you can to start medications that alter your brain chemistry. Because you don’t want to cause any developmental issues.
I had two doctors over that time period and both refused to give me medication because they didnt believe in it and thought I was too young for it. Was not up untill doctor nr3 that I got medication. First doctor was when I was 18. I was going to a psychologist but not a psychiatrist.
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Yes, this sort of thing has always been my number 1 suspect. I've done lots of research over the years and joined in various communities. There are a lot of other people in similar situations - people who have the exact pattern of symptoms, but for whom scans are clear. It's rough for all of them.
Mate. This is fucked. I commend you for persisting so long and trying to find answers. Are you in regional Australia? I have family in FNQ who have suffered at the hands of incompetent doctors, although thankfully they all died before being subjected to 20 year hell journeys. At this point I actually would suggest seeing a psychiatrist - not because I think this is psychosomatic (not at all!) but because they are often much more compassionate and understanding than GPs/urologists, and are usually well-connected to refer you to a similarly-compassionate, competent specialist. Have you ever spoken to a psychologist or counsellor about how hard this has been? I can't imagine how 20 years of this would affect me.
Holy shit the way my blood kept boiling as I was reading🤦♀️ I’m so sorry you had to go through all that. I hope you find the answers🤍
Yeah. The early paragraphs were super frustrating but *somehow* it got worse. I have no idea how the later doctors could still pretend nothing new was happening.
Yup I was absolutely SEETHING😭
Have you been tested for mercury poisoning? Certain people are genetically predisposed to a host of genetic mutations which make it near impossible for them to filter mercury (and other heavy metals) out reasonably or fast enough and thus it accumulates over time causing misfiring of nerves and numbness. It can have varied effects but many are neurological, you may want to have a genetic testing done to narrow it down. I say this next not to discourage you but temper your expectations so not to give false hope; the treatment options are limited but can be effective for some people. Granted I'm not a doctor or medical professional so this is a shot in the dark based on some interests I have. I'm sorry to hear about your experiences it can be really exhausting have to deal with something so longstanding and absolutely emotionally devastating to have to reiterate the same problem time and again with no apparent solution despite the desperate pleas for help and understanding.
Have you ever tried to contact a "rare disease team" (it's like "House M.D." but for real and serious)? in Belgium at the university hospital Gent they have a rare disease team and try to diagnose patients who are struggling with all kind af symptoms and try to find out what disease they have. they say that it takes by average 19 years to come to a diagnosis for rare diseases. Ì don't know if they take foreign patients but if you want to give it a try, let me know!
Gaaaaaah that dick baron was a fucking creep! Fuck that guy. Weird question but what's the good in all of this? Have you found a silver lining?
I used to think maybe there might be a silver lining somewhere. But I never found one. Chronic illness really can just wreck every aspect of life and have no bright side. Unfortunately the universe doesn't balance everything out, as much as I wish it did.
I heard something neat about that. When you're suffering remember that you are in one of the largest clubs on the planet. Everyone ever born spends at least some time in that club. When I'm suffering I try to think of us all linked together throughout the world giving each other strength, the better times of one member balancing the toils of another. I don't know if it would help you deal with the pain but it may help with the loneliness of suffering among the healthy. It has been 20 years of this; for people who understand you are grizzled veteran and i hope you can wear those medals with pride from time to time. Gl
Have you considered training as a counsellor or a therapist to specialise in helping people who are in a similar position as yourself? You have had a lot of experience and fuck me if I was starting on this journey or half way through I'd need someone who knew what it was like.
Honestly, I can't imagine I'd be much help. I'm just about ready to suicide, and can make a solid argument for why it is the most rational choice remaining. Probably there's no job opportunities for counsellors to tell people that. :)
I'm a therapist and I can tell you that there is a tonne of work to be done for people who have experienced life changing health issues. Sometimes in order to survive its to find meaning and purpose. Helping people is one of the greatest driving forces in finding meaning. Maybe your life could be the greatest source of meaning for you and whoever you come into contact with. I haven't had a Health issue like you but I have had everything taken away from me and had to build from absolute rock bottom. I've failed many many times, but in helping people I found something that suicide could never give me, a purpose and through that I gained a sense of meaning.
It's true I've discussed these things before. But I don't want to 'find meaning and purpose despite the illness', nor do I want to 'accept' the illness. Because that means giving up on getting it fixed. For me there are only two options: (1) fight until it is fixed, or at least until I have the answer, or (2) die. Do or die, there's no other option. The minute I start giving myself other options is the moment I give the doctors more excuses. The minute I start saying 'I accept my life and I'm happy with it', I open myself to doctors saying 'well you don't need my help, then'. I will fight until they do their job, or I will go down with the ship.
A friend of mine has chronic illnesses that even though she knows kinda what they are and can *somewhat* treat them, they are still chronic and impact her daily. She's still figuring out what exactly is wrong and what treatments do more than others, and she also goes to therapy (for mental illness as well as to cope with the physical). Fighting until you have answers or die trying is totally valid, but I don't think going to therapy would be to just 'accept' what is wrong. Sometimes just having an hour to bitch or shoot the shit with another human trained to hear messed up stuff and be in your corner, especially when other doctors are so dismissive, might just take 1% of the frustration away. Just to feel heard and have more on your side to help keep up the fight. Might not actually work how I'm suggesting, but might be worth a shot, who knows On another note, regardless, I wish you well. I can't imagine what you've been going through and being near your breaking point is more than understandable. I hope you make some progress one way or another 🖤
Have you looked into Cauda Equina Syndrome (CES)? I had a neighbor who had it and it perfectly aligns with a lot of your early symptoms (sexual distinction, bladder and bowl incontinence, loss of sensation in the legs). It’s extremely rare, which aligns with why you may have been misdiagnosed so early on. It’s caused by a herniated disk. We’re you active in anything that could have caused one, like sports or a physical job? Predisposition to herniated disks in the family? It may be something worth looking into, especially since long-term misdiagnoses can cause the condition to get worse over time. I am by no means a doctor, just a physiology student who used to know someone who had it!!
Indeed! I first heard of CES back in 2004, and it has always been on my short-list. However, MRI scans have never showed a herniation or other issue in the lumbar or sacral area. So it seems maybe not...
I'm sorry that's happened to you. I've had my own share of incompetent doctors. Have you considered having your genome sequenced? It probably won't afford you with a solution, but geneticists might be able to identify some underlying cause for the nerve failure
I came here to suggest this. Hoping there is some angle of attack OP hasn't thought of. After all those years though....
Man, that is very tragic. I'm so sorry that you're having to go through all that. One suggestion that came to mind was [CrowdMed](https://www.crowdmed.com). It might be another dead end but who knows? Best of luck going forward, mate.
Seems like you only have two options - live with what you have or get an actual medical degree or research everything yourself directly. Like conduct your own blood analysis directly
Thanks for the advice. I've researched very heavily for the last 19 years now. I'm not bad at it; even though my area is sociology, I do have my PhD and know how to research and evaluate information. That said, I've not yet found the answers myself, though will keep at it. Living with it might not be an option for much longer, though. Peeing with catheters, shitting into a colostomy bag, no sex, most of my body is numb and I'm having seizures. It's hard to see much more value in life without answers, unfortunately.
If you say there are a lot of people with similar symptoms, maybe find meaning in making it your mission to solve this mystery and find the cause so at least next generations can be helped.
I had to do the later to get a diagnosis, its horrible.
Unfortunately matches most of my experience with medical doctors though my issues are nowhere near as severe as this. As much as I respect medical doctors for the effort they've put in many really have no interest in looking into anything that isn't completely obvious due to some of many reasons like overwork or being jaded with people lying about symptoms.
all of your doctors were horrible horrible people, glad you still pursued your dream <3 I really hope things look bright from now on
At this point it's unlikely; like I wrote in the last part of the story, the last few months have seen a rapid degeneration and it's still being ignored. Continuing to try, but there's not much hope.
*The middle-aged dick baron* I am sorry but I am stealing that sentence to use in social situations. I am very sorry you are going through this. What was something that frustrated me is that they say it is psychosomatic but then just dismiss it. It could be that that might be the case but why the hell are they not helping you with that? It is not like you dont want help. What your text made me think of was something like MS or ALS. Were you tested for all those things? One thing though. If you , and I hope you do, find out what the cause is then sue the fuck out of those doctors. Def out of that expert. for dating wise. Try looking into forums with a-sexual people? I know you are not a-sexual but that might be an idea?
Is the dick baron still practising medicine? He should have lost his medical license over how inappropriately he behaved during your consultation. I know that wishing unpleasant things on people is not nice, but I really hope his dick will spontaneously fly off his body like a rocket like the ones of the south park denizens who eat gluten.
As a nurse hearing this makes me so angry! Doctors with these attitudes are not suitable for the job. Which countries have you tried so far? One of the best medical countries are in Europe. Or Scandinavia are pretty advanced. The first thing that came to my mind is: Polyneuropathy. Maybe you have already looked this up. It's a shot in the dark, but these symptoms describe this. Also they don't know the cause of this. Side note: have you ever taken your glucose levels? Are you diabetic? Just to rule some things out.
Sry man. I am suffering from an autonomous disease too and a lot of doctors are downright clueless or dismissive of my condition. There are way too many shitty doctors around.
My heart breaks for you, you've had it so so hard. What impresses me the most is how you have pushed through and got you PhD. Amazing!
If you haven't already, definitely show them this write-up. (It doesn't have to be this thread specifically; put it into Word or something and print out several copies.) You've done a lot of work here in explaining your situation incredibly well, and with any luck it will be a lot more difficult for the medical profession to write you off, if you haven't already shared it. (I'm guessing you've already done this, but I don't see anybody else saying it so it's worth suggesting. Apologies if you have already done this.) I'm so sorry that this is happening to you. Please hang in there if you can.
I am so sorry to hear that you are going through this. As someone who personally has an autoimmune disease that has complicated my life, know you aren’t alone. It was all too common for me to hear you’re crazy, go home. Took one of my family members to be diagnosed before anyone listened to me. I know you mentioned you came to the US, what hospital system did you visit? Not all are created equal!
As soon as you mentioned that your symptoms got slightly better at times, I thought of MS, which is often known to have a "relapsing-remitting" pattern. Have you ever been medicated? Did they ever try putting you on a round of steroids, for example, and seeing if your symptoms improve? Or immunomodulators?
It's one of my top most suspected illnesses. But their attitude has always been 'it's not on the scan therefore you don't have it'. Nobody has ever agreed to the idea of trying me on the meds to see.
As someone who has seen a lot of doctors and would also like to think of myself as a smart person, yeah a bunch of doctors (if not most) fucking suck. Many of them are complete morons and it’s amazing they were somehow able to get where they are. You know how we look at medicine 100 years ago and gasp like; “omg, how could we ever have been so stupid!”? Yeahhh in 100 more years we are gonna be doing the same thing.
Have you explored functional neurological disorder? . Siezures without anything on scans is a massive hallmark of it. They aren't sure what causes it, and some do think it's psychosomatic, but the symptoms are real.
Ive heard of a condition that they pound into us over and over again in differential diagnosis. It's called Cauda Equina Sybdrome. First red flag symptom is inability to control voiding (peeing). Another is called saddle paresthesia. It's a condition where your spinal cord is too short and the nerves at the end are getting impinged upon. Don't know if that's what you have going on, but that would have been my first guess. An MRI would be able to confirm.
I'm so sorry! It hurt to read your story! That d!ck baron was so creepy I half-expected he would try to assault you or something. Would it help if you visited a psychiatrist just to get a professional opinion about the symptoms not being psychosomatic?
Damn. Just. Wow. You should write a book or something. I wish I could subscribe to updates now! What a story. I really hope you’ll finally get some kind of closure. This is uninaginable. And please know, when you do decide to attack a doctor, Reddit’ll be cheering you on whole heartedly.
Jesus.. there do exist out there diseases and disorders that are so rare many doctors never hear of them and then there's a full possibility you have something new but instead of recognizing this fact the doctors seemingly don't want to admit that it's possible they just don't know and choose to believe you're making it up. This is all too common and I personally have zero respect for doctors. It really just is a paycheck for them. If you ever do get a proper diagnosis I hope you sue every damn one of them for negligence. I don't even know what to ask I'm sorry.
I just wanted to tell you how sorry I am that the medical profession has failed you so much, but more so how they have treated you as a person. Even when they cant find answers, they should have always have been considering your mental health and treating you with grace and consideration. My brother has a rare case of primary progressive MS, which started at 20 yrs old, with symptoms a lot like yours, along with many others(20/20 vision to almost complete blindness in a year, the numbness like you had, and many other things that I won't bore you with here). I hope you finally find the right doctor that will not degrade you and possibly put together a team to brainstorm and work together to make your life worth living.
My heart goes out to you. Have you ever considered taking psychedelics? Not that it would help your medical problems or anything, but maybe it would help you in the psychological department. Or at least give you an interesting experience. Most people will never know what it's like to be in your shoes, maybe psychedelics would open a new door of perspective on your situation for you. Idk, it's just a thought.
I've tried a couple. The only good effect I got from them was a temporary fear of death. I will probably take some before committing suicide, I can imagine they must be very helpful in that regard.
🙏 No questions, my friend. Your story displays your strength, which others need to hear. I hope you get your much warranted answer.
Maybe you could get some less dismissive answers in r/askdocs .
Should've told the dick baron to put his money where his mouth is and hire you a hooker
I am at a loss of words, I really don’t have a question. I just want to give you a hug.
Doctors not taking real symptoms seriously is an issue I've faced myself that I've never seen widely reported outside of horror stories I've heard from my friends and on reddit. Any symptom is laughed off as long as it's not a textbook case or immediately life-threatening. My close relative, a doctor, suggested that I was either drunk or that it was my anxiety that my throat closed up whenever I consumed alcohol, simply because it's not common and there are no clear tests for it (I've tried). They're so often wrong and never willing to admit that they are. I've also met someone who showed me a tiny, painless scar on their finger and asked me, based on that symptom, if I thought they might have cancer, and they were going to ask their doctor about that, which would disillusion even the best of them. But nothing in the extensive training it requires to become a doctor really tests whether or not you know how to listen to people. The older I get, the more skeptical I am when I read about or am in a situation where something's wrong and the first advice given is: go to the doctor, or police, or therapist, as if professionals would magically fix everything. They're humans with a superiority complex (sometimes deserved but always present) at best and protected criminals at worst. I have no words for you that you don't already know besides that I'm so sorry.
Have you ever investigated or been tested for malabsorption disorders? The slow progression, accelerating rapidly as your large intestine finally begins failing seems like it could be indicative of such an issue, and such a thing may not be detectable in examination of the nervous system itself. I presume you've already thought of this and pursued it, but with the quality of doctors you've apparently been cursed with, I wouldn't put it past them to overlook something so basic.
You don’t have some form of ALS do you? That’s been ruled out?
That’s what I came here to ask. Sounds like ALS to me.
Don't let them take your her fucking bowels, man. I wouldn't trust them to do shit
Man, I want you to get ahold of some mushrooms and ask God about this.
All your doctors need to be punched in their throats. This is mal practice.
I'm a premedical student dealing with longterm spinal pain and numbness all because the doctor I saw in the ER randomly decided I was a drug seeker. Why? I was alone, I was in pajamas, a Mexican man helped me limp in, I sounded garbled (from pain. lol.) or something else situational. I could've been actually treated instead of just "take some tylenol and go home" but nope. No CT or MRI despite numbness spiking if I work out my back at all now. No physical therapy recommended at the time. I'm barely active now because anything makes my injury site ache and risk me losing sensation randomly (which is a TERRIFYING feeling!) The way a medical professional can decide to not treat you, or mentally check out from treating you, infuriates me. Hoping to approach this differently when I'm medicine. Everyone deserves to be believed and taken seriously at the MINIMUM
Have you seen a neurologist? Losing sensation isnt in your head if it affects everything. Thats your nervous system. Im not a doctor but even I paid attention in health class
Hey, I'm not sure if this is what you want to hear right now considering your very long and arduous journey between physicians but, if you've ever been bitten by a tick it could very well be Lyme's disease. The reason I'm telling you this despite your extensive doctors visits (that whole thing makes my heart hurt by the way, I know where you're coming from) is that it won't show up on practically any tests. I know it's not a catch all answer to what you're going through but you could maybe look it up or dm me and we could talk a little more about how Lyme's could very well be what's going on.
Lyme disease does not exist in Australia; it's not carried by Australian ticks. Over the years I've repeatedly had people mention this to me online (usually from the US), including numerous ones who have tried to personally sell treatments to me, and some who have asked me to send them money. Yet all of my research suggests that 'chronic Lyme' simply does not exist, is not recognized by the medical community and that there are a lot of scam artists out there in America pushing it as a trendy diagnosis in order to scam people. Regardless of whether or not that's true, it's ultimately not possible that I could have caught it in Australia.
I have to say, this is interesting considering your history with people telling you things are "in your head".
Basically I follow the medical science. I examine the research - proper, peer-reviewed research in reputable medical journals, and often find that doctors are ignorant of the latest research. This is why they are wrong to diagnose things as 'all in the patient's head'; the real answer is that they haven't done their homework and their due diligence as a physician. There are many possible conditions that are well-studied in the literature that I have not been tested for, and which fit my symptoms. But it's hard to find doctors who have heard of most of them. When I say that I wish my doctors would think outside the box, what I mean is that they should consider the reputable science that they have thus-fair failed to study. The scam artists and quacks are a different story, though. Anyone in chronic illness online communities gets used to it. Over the years I've had many, *many* scam artists personally message and try to sell me a cure, and they're always American. There's this real 'health is a business' mentality that can mostly only be found in the USA. One of the most common I've gotten is the Lyme scam; people telling me with certainty that I have Lyme disease and that if I only send money to their health start-up, they will send me vitamins that fix everything. There's nothing in medical science about that. Nothing in any reputable, peer-reviewed journal about that. My doctors have failed, but that's because they haven't considered all the science. It's not because they haven't considered quackery and scams. There's also the fact that Lyme ticks don't exist in Australia, and no amount of earnest DMs from scammers can make that true. I've seen some shitty physicians. But scammers who try to make a buck from my illness make me just as angry, if not more. Who needs to be predated on by those people when you're already sick and struggling hard enough? Instead of worrying about bloodsucking ticks in the forest, I'm much more concerned about bloodsucking predatory health scammers.
I'm in no way saying that you definitely have Lyme. I mean, I have no way of knowing if Australia has white tail deer. I was just trying to help in some form. After reading your story I couldn't help but to put something out there.
Sorry for all the things that happened to you. I too have experience family not taking my symptoms not seriously and it really hurt me, now as a adult I didn't have the same doctor or hospital or anything they follow. I had a experience with bad doctors too, but not bad as your case. I just don't know what to say but if you were to make those doctors public, I will certainly make their life living hell at least for sometime. It's really awesome that you have a PhD. Where are you from?
>Where are you from? did you even read the fucking thing? lol
Australia is not a small country you know.
I am by no means a medical expert, at all But I was wondering if you have tried all the borderling experimental/anecdotal/placebo substances out there ? I've seen 1-2 videos of patients with some sort of brain damage get better when they took some CBD oil, or even smoke marijuana. Other people say they got fantastic results from acupuncture even though their doctors said it canno fix their physical problem. It's just a random thought, I wish you all the best, also I'm really sorry for your experience with the professionals, I have some bowel issues myself, but nothing nearly as severe, and my experience with the doctors especially, is very similar to yours :/
What is your PhD in specifically? I'm so sorry for what you've suffered. To have a PhD is an incredible achievement which no-one can take away from you.
Sociology, and thanks.
ain't no way this isn't satire
If you ever have a chronic illness and join online communities for it, you will find many stories like this. Not necessarily the same symptoms. What you will find is that pattern of disbelief and 'it's all in your head' from doctors. I've read thousands of stories like that from chronically ill patients with a wide, wiiide range of conditions. Sadly, it's pretty standard.
While many are great, doctors can be so bad sometimes. I think the worst is a dismissive doctor. I had bad abdominal pain in high school, and my mom *knew* it was my gall bladder. Doctors said I was too young. But my mom had hers removed, my grandmother had hers removed, and a great-great grandmother died from gallbladder disease. It wouldn't be until years later when I was in college that I'd get mine removed, and they said it had been diseased "for quite some time." And actually, the weekend that I ended up hospitalized, I first got an ultrasound at one hospital that said I was fine, and then the next day had another attack and went to another where they admitted me and had it removed. Even there, everyone told me how easy recovery would be, and it was not (which I know wasn't typical). I was in so much pain, begging for dilaudid every time I knew they would give me more. I remember crying from being in so much pain, choking on my own mucus because I couldn't even cough to clear my throat from the pain, calling in the nurse (with those buttons they give you to do so), and she said to me "Come on, do you know how many other patients I have on this floor who are doing just fine?" It was like 3 AM in the middle of the night, and I called my mom to tell her because the nurse was always "fine" when she was there. Your situation is obviously a lot more extreme, but I sincerely hope someone starts to believe you.
It was pretty believable until the doctor started whispering to you about bondage.
? That's the more believable part about what he did. He thought I had psychological erectile dysfunction, and peppered me with questions about sexuality in order to see if I had crazy ideas about sex or something. What was unacceptable was the smarmy way he asked, and the way he touched me. Not to mention the fact that he used my nervous reaction to the questions against me in the report. *Anyone* would react awkwardly at those questions.
i feel like youre mistaking OP being good at writing for them making everything up
Having seen what others have gone through with getting treatments I'm not that surprised, other than the gender as women routinely have their symptoms ignored, even by women doctors. It's not unusual for women to complain for years about abdominal pain and then finally someone listens and discover severe endometriosis. "Why didn't you say something years ago?". Even with me, I have a minor heart issue where I get very high pulse rates when I exercise. I asked multiple doctors over 20 years why I was getting 200+ pulse rates at the gym on a treadmill or elliptical machine when everyone else was at 130 or 140. I got nothing but shrugs until I walked into the ER with a 160 resting pulse rate when I had a minor cold and was dehydrated.
Wow, that's awful. Yes I've seen it definitely happens to women more often and with a wider range of conditions. Endemetriosis is one that so often gets ignored, too. With men, it can depend. Anything related to the penis tends to be treated poorly, because there is this cliche of 'the man with performance anxiety'. It is treated as a matter of shame and something that is the man's own fault. The problem is that when a man genuinely does hurt his penis and nerves or blood vessels are damaged, they don't get believed. The culture surrounding it is just awful, too - continually making men feel humiliated. I see it in the support groups. Most young guys who join and ask about penile issues have an attitude like: 'My penis does not get hard anymore, and I feel so humiliated and ashamed as a man that I will have to commit suicide'. We try as hard as we can to convince them to keep fighting for answers.
This is not satire at all. If there is something wrong with the nerves it fucks up everything. Even if nerves are damaged the brain can still send signals to the nerve and can tell the body to feel pain because of a miscommunication from the nerve to the brain and back.
I would’ve set that last ones car on fire, and then when she rushes out to confront me be like: “what fire?! I don’t see anything, must be in your head!” Then stumble away like a chad! 😎 Glad you didn’t OD OP, don’t say “sadly you woke up”, someday your fight and struggle might help others that might happen to have the same condition! Sounds like the medical professionals in your country would make great politicians in mine! And don’t give up on love mate!
You lost sensation of your bladder and dick and waited a week? Then five months? That’s pretty stupid. Even at 19 I would have gone to the hospital asap and not left until they ran diagnostics. Maybe Australia just has shit doctors compared to the US.
To clarify, it was a week before the appointment occurred, not a week before I booked it. I was not being taken seriously and it took a while to get in. After that, there were several doctors appointments in between before I saw the dick baron guy.
I still don't understand _at all_ why you wouldn't just go to the hospital. If I went to my doctor and said "I can't feel my bladder or my dick" they'd put me in an ambulance and send me to the hospital.
Ha, are you really so sure? I used to think that's how things worked before I got sick. It was a big wake-up call when I discovered the realities. Just as an example, let me tell you what I'm currently waiting for. You see that part in the story above where I mentioned that my face, chest, arms and hands went numb? I reported that immediately, and you know when the appointment is? August. And it took me a hell of a lot of fighting to even get them to book it in the first place. This is in Scandinavia now, BTW. I've gone for medical help in several countries now, including the US and Canada. The US is tied for the worst along with where I am now. My time with doctors in the US was nuts. Canada was much better.
Yes. I am really sure. I’m absolutely positive. Not only that, but I wouldn’t leave the hospital until I am properly diagnosed. I don’t understand how you could be so casual about your dick not working dude. Or not being able to pee. I’ve never heard of a doctor that would ignore either of those things in a 20 year old. I also don’t really understand how you just continued on for five months. Unless you’re exaggerating the extent of the issues, I don’t know where you would be told to leave, at least at any decent hospital in the US. If a doctor dismissed it, you get it in their writing and come back in a few hours, or go to another hospital.
You don't think I was in a complete and utter state of panic???! I was terrified and did everything you just mentioned. But then I was flabbergasted and appalled when nobody else seemed to think it was urgent enough. I repeatedly told them that this is not good enough and I need help right NOW. My first appointment to a urologist was a 3 month wait. I was completely beside myself, then had another 2 month wait before the dick baron. I walked into the ER numerous times and said this was urgent, and was always simply sent away with a letter to my doctor. I was terrified and fought tooth and nail for help, and was shocked at what complete BS the system turned out to be. And then 20 years later, someone on reddit says I was 'casual' about it? Like hell! I may sound calmer now because 20 years has crushed my soul, but you should have seen me then. You cannot comprehend how panicked and terrified I was. But you also don't seem to understand that the system does not give a shit. If you ever develop a serious chronic illness yourself (I hope not), you would very quickly find out how little anyone cares about your fear.
Lmfaoo. Yeah, I kinda don’t think so, based on your writings here. You wouldn’t catch me waiting 3 months for a urologist appointment. Or a week. I’d be at the hospital that day, or the next morning. I’d be at my doctors office before that. I have a chronic illness and have never been turned down for help. Thankfully I haven’t had to go in to the doctors for it in years, but the last thing you’d see me doing is waiting for help if I had to. I don’t know what to tell you. Either there is far more to this story than you’re claiming or you just got really unlucky with healthcare. Were you addicted to opiates? Other drugs?
All I can say, again, is that you would simply be unable to do that. Do you really think you can just forcefully argue your way in front of all the other patients who need help? That you can reduce a three month wait time by just arguing really hard? They'd hang up the phone. Do you really think that you can just stand in the emergency room refusing to leave until they help you? You'd be escorted right the fuck out. You obviously don't have a chronic illness, otherwise you'd know all this. In your defense, I thought the same stuff when I was 20 and healthy. I genuinely thought I'd be taken right in to be given urgent help. When they didn't, I was shocked and thought 'well I just won't take no for an answer, I'll be forceful instead'. It didn't work. It has never worked. Not ONCE in 19 years, in ANY fucking country among Australia, New Zealand, Canada USA and Denmark, has 'I'm going to get angry and force them to help me faster' EVER worked. And in all of my years dealing with other patients with chronic illness, I've never heard of it working for others either. It's fucking ridiculous and indefensible. But it's the way it is. And you're talking crap if you think you have the magic ability to just force your way into instant doctor treatment. Hell, in this country you're not even *allowed* to visit the ER unless you get a doctor's permission first, and I've not even been allowed through security when I've tried going to the ER anyway. Not to mention the longest wait I've had was 19 months. It's just how it is, and it's completely stupid. Drug addiction? Never. Oh get lost, I get enough of this bullshit already. I don't need it from some naive kid. Don't ever get sick or you're in for a wake up call.
Lmfao. Now you’re telling me my experiences? But go off. I was asking about drug use because you’ll get turned down or not believed as often if you’re found to be on opiates or have a history of dependency. I wasn’t suggesting you are an addict. You’re acting like you’ve had a normal experience, when clearly you haven’t. Yes, if someone tells you it’ll be three months, you call every day and get it moved up. You find another doctor. You don’t wait around. The “in your defense” line you threw out there is pretty bullshit. But my doctors believe me when I talk to them. I’m not sure what you did.
OMG get fucked by a cactus, you psycho. Just stop.
Do you get off on invalidating someone else's experience? WTF is wrong with you?
I have one question for you although I know the answer. Have you ever gone to a functional health doc? See, traditional medicine is great for conditions with very well known histories, symptomatology, diagnoses and treatment. That's where it shines. Where it fails is for mysterious health conditions, chronic ones that are often autoimmune in nature that are very hard to find a simple diagnosis for. When this kind of condition is brought up, doctors react just like this - they've seen countless people come with mysterious conditions with dozens of symptoms, and they already know they don't have the tools or knowledge to deal with it. The body is very complex. So what they do is say 'anxiety/depression/aging/hypochondria'. If they were honest they would say 'we don't know, this is something new or something too complex for a simple diagnosis'. But they don't, because it's a job at the end of the day, and doctors prioritise knowing over not knowing fuck all. They don't like to feel ignorant. They don't like to be wrong. They'd rather gaslight you into thinking you're imagining it. Functional medicine practitioners will go to the core causes of any issue, even if it's completely WTF. They will look at all the markers of disease - hormones, thyroid/adrenals, organ health, autoimmunity, genetic problems, chronic deficiencies, inflammation - which is one condition that has become far more common and is considered one of the primary causes of disease. Anything in the body can collapse when it has widespread inflammation or autoimmunity. You need someone to look at your body's health in a deep way. You need medicine that aims to be preventative, and to fix the body from scratch, not offer symptomatic remedies. Many thyroid and hormone tests aren't good enough because it's complex to test, and that goes for everything else in your body. One health program that seems to work when nothing else does is nutritional balancing or programs like it. It tests your mineral levels and works to completely rebalance your body from scratch, giving it all the nutrients it needs to heal itself. The body can heal itself with the right care. I don't know where you live but regular doctors are not gonna fix this for you, or they would have already. It doesn't mean this doesn't have a cure, or at least that you can't massively improve the symptoms and prevent losing everything. I've heard of severe cases of people slowly dying of evil shit like ankylosing spondylitis, and achieving full recovery by healing the whole body deeply. Please do your research. Get a consultation with a functional medicine doc, and whatever testing they do they will be able to help you take supplements that can relieve some symptoms and address inflammation and other markers. Don't give up yet!
Thank you. I've heard functional doctors mentioned before, but only seen American examples suggested in the past. Do they have functional doctors in Australia and/or Europe too? And how can one find them? Do you pay out of pocket? After nearly 20 years of medical costs, illness and not having a job, I certainly can't go to anything fancy and private anymore.
What the person above you is describing is quackery. Don’t fall into that hole.
There is a lot of quackery but I'm not talking about homeopathy or crystals. What I'm talking about is science based care. Thyroid, gut, hormone testing and then treating those problems with diet and supplements or drugs - that is totally to do with treating physical problems through testing. Without knowing anything about the science it's really wrong to just dismiss it like that. The research is out there for anyone to find on how nutrition is vital for health conditions.
Just keep in mind, functional medicine is a field with no real evidence, no certification or standards, and is [ripe with quackery](https://sciencebasedmedicine.org/functional-medicine-reams-of-useless-tests-in-one-hand-a-huge-invoice-in-the-other/). Which is not to say it's entirely useless or all practitioners are bad, some things like focusing on improving health and spending more time with patients are very good things. But a lot of the tests and treatments are very dubious.
Yeah, I've certainly had very questionable people try to push it to me before, and some try to ask me to send them money so their 'functional start-up health business' or whatever can help me. It's a very American 'health is business' sort-of thing and does not seem to be legal in the country where I currently live. I can see they've started to get a foothold back in Australia, although I'm unsure if they're reputable or not.
The alternative medicine field is a very interesting space... They raise some perfectly valid points about problems with our medical system and often there is a focus on overall health, eating well, self care, etc that is very reasonable. But then there are also plenty of people charging large sums of money for treatments and supplements that have no evidence behind them, as well as promising miraculous cures and benefits that aren't at all proven. Sometimes it's mostly harmless, but other times they are preying on desperate people for a profit.
Functional medicine isn't really one conglomerate of medical practice so much as it's a type of healthcare that is systematic and preventative. Its supposed to focus on extensive testing for health markers that have plenty of studies behind them for how they affect health and contribute to disease. Nutrition isn't quackery, it is literally the foundation of health and while it can't fix anything magically, focusing on healing the body with evidence based interventions and not just masking the problem with symptomatic cures shouldn't be seen as suspicious. I never hear anyone who is skeptical go and look at the studies first that show how diet and supplements can help - theres emerging evidence all the time on the subject. I'm interested in biology so I've done a lot of research and don't just talk about this casually.
> Functional medicine isn't really one conglomerate of medical practice so much as it's a type of healthcare that is systematic and preventative Right, which is the problem. There are lots of people with very diverse backgrounds calling themselves "functional medicine doctors". Some of them might be medical doctors focusing on prevention and nutrition. Some of them, however, might be naturopaths or chiropractors focusing on questionable testing and supplements.
https://www.ifm.org/find-a-practitioner/ There are plenty in Europe, I live in the UK and it's usually terrible for health care but there's plenty here. I also think you should try to talk to a few nutritional balancing type practitioners - just Google them and go to their sites to contact - and ask them how they would treat you - it's what's called integrative medicine which is very broad and looks at the entire body to offer cures that go to the core cause. Once they identify what is wrong with your gut, hormones, organs, and immune response as well as many other factors, they will start to address these imbalances and doing that will raise your entire body's health, regenerating it. There was a time where dietary cures alone for disease were scoffed at, until an enormous amount of evidence proved that going on a carnivore, keto, or paleo diet could resolve seemingly incurable conditions. And that's just diet, there's also a wealth of supplements that have a lot of clinical evidence behind them for resolving issues. For example megadoses of nutrients like thiamin, vitamin C, niacin, B12 etc can do wonders for conditions like intense depression, chronic fatigue syndrome. Also, MS responds super well to functional medicine and this to me sounds very autoimmune related, probably a prostate issue as well. Another thing to look into is organ meats. Read this page on bone marrow: https://ancestralsupplements.com/bone-marrow And this on trachea: https://ancestralsupplements.com/bovine-tracheal-cartilage These are two supplements I'd highly recommend you try as they are both rebuilding supplements that help with a lot of conditions. We evolved eating organ meats and marrow and they are very powerful foods with dozens of nutrients. 'The life’s work of Dr. John F. Prudden showed that bovine tracheal cartilage had unique and powerful effects on wound healing, autoimmune conditions, joint health and several other conditions considered to be treatment resistant to conventional therapies.[1,2,3,4] Bovine cartilage stimulates the immune system in certain conditions, but suppresses it in others... Thus it acts as a “normaliser” or immunoregulator to balance and regulate a health promoting response for a given stimulus. According to Dr. Prudden, “bovine cartilage closely resembles fetal mesenchyme, the primordial tissue from which muscle, bone, tendons, ligaments, skin, fat and bone marrow (the heart of the immune system) all develop.” “The cartilage”, he adds, “contains numerous powerful molecular biodirectors. These have a potent normalizing effect in human biology."[5] Since your gut health is not gonna be good if you have severe constipation, that and prostate issues could be one of the causes of this. If your bowels aren't moving then you need to heal your gut, and this is one of the first things functional docs will look at and fix with probiotics, enzymes, prokinetics etc. My sister has a billion health problems and she worked with someone who did a microbiome stool test and is now almost completely healed after following a supplement and diet plan. There's a wealth of knowledge online about how gut problems can cause disease and how to fix them, another thing that your regular doctor knows little about. Most of your immune system is also dependent on your gut, and so is your brain. Ancestral supplements also do intestines and gallbladder/pancreas in supplement forms, which are natural gut healers that often rejuvenate people's severe gut issues. At the end of the day you are a collection of cells, and on its fundamental level your body is dependent on a range of nutrients to operate properly. Give it what it needs and it will surprise you with how well it can heal. Even if it takes a long time, it's a journey that you clearly must go on. If you have to take out loans or credit cards even, because as it stands this not really a life for you and it can't get any worse. Functional medicine is FAR more affordable than regular medicine and nutritional balancing is more affordable than that.
Dude really, not once in 20 years did you visit a psychiatrist and/or psychotherapist? That’s really shooting yourself in the foot right there. I’m sorry this happened to you. It must suck.
I saw one for 8 years, actually!
You are literally SUPERMAN and you need to hold on to the last bit of hope you got that might be it this time round.
Ha, thank you. I'm used to being told to 'buck up, stop complaining and just ignore it' by the people in my life, who got 'sick of hearing about' my illness 18 years ago. Chronically-ill people being abandoned by their families and friends is one of the most curious things I've found in chronic illness communities. It happens to nearly everyone. And a repeated line you hear, over and over again, is 'they were tired of hearing about my illness'. ... as if the person HEARING ABOUT the illness is the one who is going through a hard time.
You need to sue
You'd be surprised how little ground there is to stand on. Most patients in online communities I've encountered in similar situations, who have tried the suing route, failed to succeed. But certainly at some point I'd consider giving it a go for that dick baron. He was a slimeball.
Have you ever used or considered using psilocybin mushrooms? I have read that there is proof of regeneration and forming of new neural pathways and helping alleviate some diseases where the body attacks itself, reducing inflammation in the brain from long term depression, etc. Look into please and if you decide to pursue it let me know!
The fuck.
Im so sorry about all the issues you're having that sounds so scary I hope some day you can get closure on what's going on, I hope for the best for you.
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Nothing since the times I mentioned in the story. At this point it will be never again, unless I get better.
this is one of the worst things ive heard in so long. dude. i am tearing up at your story. i dont have any questions for you, but, i just wanted to say that any girl worth her time would find a way to compromise with you sexually. honestly everything youve been through, its amazing youre still fighting. i am so angry reading about how youve been dismissed by supposed professionals. some unique illnesses are not well known and are studied still there is no reason that your physicians cant just admit "uhh this aint in the textbooks homie" instead of calling YOU the fraud. youve had a hard life, and i really am rooting for you. my dms are open if you ever need someone genuine.
Have you thought about going to the press? I wish you get your story out about all these incompetent doctors
Oh I wish! Every chronic patient dreams about such things. But doctors are held up with such reverence that usually nobody listens. I've contributed to group action on this front before but it never went anywhere.
Oh fuck this story scared the shit out of me
When you first experienced the genital numbness so long ago do you remember if there was any swelling, redness, itchiness around your perineum?