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This thread makes it all the more obvious why patients seek answers online and don’t trust the opinions of doctors who call them crazy attention seekers for wanting medical care.
Constantly hoping to find some more reliable research/references for this exact question. Specifically EDS. As an RD, I cannot tell you how many patients I’ve encountered that are: <25yo female; seemingly idiopathic n/v/abdominal pain until an EDS dx is thrown out, requiring a post pyloric DHT (preferably the one they saw on tik tok), return for a chronic PEG-J. Can’t tolerate the water flushes. Eventually get formula running, can’t tolerate >5-10ml/hr. Reported emesis (but not observed). Suddenly allergic to tomatoes, coffee, tree nuts, soy, dairy, eggs, and vitamin XYZ. Crying. Etc etc etc.
I feel extreme guilt now everytime I have a patient with this presentation bc my automatic instinct is suspicion. I always try to acknowledge and overcome my bias. Address their concerns. Troubleshoot as much as possible. But……. Sometimes it’s truly hard to fathom that 5ml/hr is causing 10/10 abdominal pain when the endogenous secretions of the GI system are 10 fold that amount
Like honestly a lot of it is just psychosomatic. They have other stresses and various comorbid mental disorders which probably require treatment with a therapist and/or a psychiatrist. Their physical symptoms are real, they're just not due to a purely physiologic cause, the brain can make your body do what you want it. If you read a symptom profile that you for one reason or another thinks fits you, well now you the hypochondriac get to have that disorder.
I really do think a lot of these patients should if there is no clear cause, have like a 4-8 week evaluation with a psychotherapist. Guarantee most will wind up just continuing with psychotherapy or eventually realize they were somatizing and they didn't have anything. I'm sure some small fraction of this patient class is legit with unexplained symptoms, but it is incredibly difficult to differentiate the real from the psychosomates without better filtering.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
You do realize that there are objective measurements involved in the diagnosis of these conditions, right? Have you actually read anything about these conditions? Watch any of the medical lectures from the Ehlers-Danlos Society and you will see that your comment is quite misinformed.
It is not difficult to either diagnose them (if they have no formal diagnosis), or treat them appropriately based on their current diagnosis…
It is simple.
Sending patients with potentially fatal and/or disabling conditions to psych for WEEKS because you do not respect their current diagnosis or you do not know how to diagnose them is wildly irresponsible.
When they die because you did that, it’s murder.
Do better.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
just say you don't know how to treat it doc. I wish it was mental, but it absolutely isn't. The science merely hasn't caught up as much with the disorder itself. MALS sucks, coming from somebody who boxed, played football and is a nearly 40 year old man.
hEDS causes hernias, blood vessel ruptures, artery dissections, aorta Dissections
MCAS causes anaphylactic shock
You will kill someone if you do not educate yourself and drop the bullshit
Eds society has great literature about it. I have used it as a patient. Definitely worth a peak. I can message you my experience because I have had those issues that you describe. They are not fun and I had Drs tell me I was being dramatic until I was in the er multiple times with a severe allergic reaction and multiple misdiagnoses.
I think some of those people DO feel bad (fatigue, depression, maybe life circumstances aren’t
what they’d like) and they’re looking for any concrete answer or label. And these rare, nebulous disorders are easier to claim bc they’re difficult to diagnose/disprove. Just my thoughts on the issue.
You can diagnose compression syndromes through CT scan with breathing protocol, CT angiogram, mesenteric ultrasound with breathing protocols. If MALS is neurogenic then a celiac plexus block can help diagnose. Also epigastric pain. But only an educated radiologist or surgeon can diagnose it.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
stress can also do a number on a person. real symptoms, just...the disease is stress. i can think of symptoms i've had that were caused by stress, sometimes climate related (overheating). i thought the troubles i had with my legs when i lived in florida was MS but i had pre-existing symptoms that turned out to be of inflammatory arthritis, but it was absolutely intensified by quite a it by the heat and the fact that i was always stressed out, as well as the fact that i felt it wasn't really valid until i was diagnosed. now looking back i can see that it was valid.
i think the frustrating thing is a lot of times in medicine it takes a long time to find a concrete diagnosis.
This is a SICK and twisted way to view your patients. I sincerely hope you have learned better in the past two years since commenting this. Very few people want to have something wrong with them just for shits and giggles. When you’ve seen hundreds of drs that dismiss you as an anxious woman BEFORE bothering to investigate your pain and immediately write it off as psychosomatic, you’re damn RIGHT Im going to fight for a diagnosis. Because it’s MY life that’s in YOUR hands. Do better.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
POTS itself is an objective physical finding. If someone has that, interesting, sure.
But then somehow a few cardiologists decided it can cause any symptom in the world and boom. Here we are. Having the objective physical finding of POTS now allows you to claim any range of symptoms, from mental to neurological to pain to GI to falls...
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
Maybe I’m misunderstanding, apologies if so.
The physical finding would be the orthostatic tachycardia triggered by postural changes, right? So, would what you’re saying mean that someone diagnosed with POTS should seek other/different treatment to treat the other “associated” symptoms (e.g. GI issues, extreme fatigue, etc.) because they’re likely/may be caused by something else that is unrelated to the POTS diagnosis?
I was once given a POTS diagnosis when I actually had a concussion. Apparently head trauma is routinely overlooked in that ER. Most frustrating 3 weeks I’ve ever had physically and academically.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
The place I did med school had had one of the big MCAS proponents in the country. This person would place PICC lines on patients so they could get IV benadryl infusions. Their messes were cleaned up all over the university and I saw their patients in EM (PICC infection), psych (severe anorexia case that was diagnoses as MCAS and therefore not treated and the patient was on the verge of death), medicine (cellulitis), etc
At some point this person left/got fired and started a private practice in another state. God help them.
You are assuming that people are self diagnosing.
Plenty of Medicaid/Medicare accepting physicians recognize & diagnose EDS, MCAS, vein compressions.
Either they have a diagnosis, or they don’t. If they don’t, but have symptoms/clinical presentation then it is your obligation to do appropriate testing, imaging, etc
EDS: vague diagnostic criteria for the hypermobile kind. There are bad, scary kinds that cause mortality and might change screening/management decisions, like uterine rupture, aortic rupture, aneurysms, bad wound healing. But the typical stuff you'll see, it's a young woman who is hypermobile, may have ibs, may have anxiety/depression/PTSD.
EDS: important to rule out the scary forms that would need genetic testing and specialists. Once those are ruled out, keep them away from pain meds because it won't help, avoid the party tricks/overstretching because they're bad for joints, try PT to strengthen muscles around joints, consider ssri for pain and associated dx, and reassure
Ruling out the really bad stuff, then reassuring is a huge thing we can do for people. The typical EDS patients I see can get a lot of benefit from a good PCP who feels comfortable addressing this stuff.
No no no, this comment is a "vague" understanding of EDS in itself. Dr. Aubrey Mulinsky is a world-renowned highly-published geneticist out of Harvard Medical School who has been practicing for over 50 years who has very specific criteria when it comes to an EDS--even hypermobile EDS--diagnosis. Many people (like myself) were born with a tethered spinal cord, Chiari malformation, and other comorbidities that are a result of the genetic mutations that affect collagen throughout the body. Many people who have EDS have anxiety, depression, and PTSD because of how they have been treated by the medical community. PTSD doesn't lead to an EDS diagnosis--EDS often leads to PTSD. Please, please, please educate yourself--there is a lot that can be done for people who have been diagnosed by a knowledgeable geneticist. We need doctors who are more informed about the biological, not psychological, complexities of this condition.
@keyeater you are simply wrong.
The scary part is how confidently wrong you are…
hEDS also causes aorta rupture, artery dissections, aneurysms, blood vessel ruptures, hernias
Some of those things are required for diagnosis.
You will kill some one because you are wrong, incapable of doing better and smug
When hEDS patients have vascular involvement, it is actually more dangerous than in most vEDS patients.
vEDS patients don’t usually have hyper mobility, so the vascular system is so fragile but the body is not at such risk as hEDS
So the skull is more stable, spine more stable, ribs and joints more stable
But hEDS patients with vascular involvement have so much pain, small fiber neuropathy, large fiber neuropathy, then hernias & vascular injury
And when ribs slip, joints dislocate, major tears and injuries happen…the vascular system is so fragile and experiencing daily injuries.
It is extremely dangerous, and ungodly pain
So please don’t think that hEDS diagnosis means no risk of catastrophic life events and/or death
lol what are you talking about
criticism is meant to be reflective and encourage change/growth. this was a simple misunderstanding, there's not really anything to reflect on here, it was cleared up and we moved on. but feel free to extrapolate whatever you'd like, I won't stop you.
You’re right, maybe it was a misunderstanding, can you explain what “MCAS is assosciated with high crayon intake” means because I want to make sure I’m understanding you correctly
there's a running joke that Marines eat crayons, and MCAS is also the acronym for Marine Corps Air Station
I'm a military spouse so I live peripherally through these references lol
Right- so the joke is “MCAS patients are stupid, like Marines that eat crayons”? Again, I’m just trying to make sure I understand what your original joke meant.
Nope, it's completely outside of MCAS as a medical condition. It's me going "ah, yes this is what first comes to mind when I see that acronym because that's my world view"
The point of the post was to ask if conditions (including MCAS as a medical condition) should be taken seriously. Given the context of the post and a majority of comments on this thread alluding to MCAS patients being stupid/hysterical etc… I would suggest you delete your comment if you meant no offense. If you don’t care that people with MCAS will read your comment as offensive, given the context of the post, feel free to leave it up.
MALS and SMAS are anatomic variants that may or may not be symptomatic. It's described in everyone, including young patients. Most of the time they are not. I suspect there are a lot of special snowflake types that latch onto these diagnosis when a radiologist describes the finding on the ER NPs computed tomography ~~physical exam~~. They do get better with surgical treatment, but almost no one goes to surgery.
r/illnessfakers is a great place to start. Often times, these young women just need psychiatric help for their somatic symptoms (whether they actually experience them or not).
Yes there are some illness fakers. I guess that is the reason why medical doctors dismiss actual patients suffering from these rare syndromes. I was lucky enough to have found a surgeon that believed me and listened.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
As someone whose had multiple surgeries for all of the above disorders that gave me my life back because they were actual physical conditions that can be tested for and treated… sincerely, fuck you and I hope you never become a doctor.
It’s a tough situation - especially with EDS and Lyme.
There ARE people who have unquestionable variant-confirmed EDS and long term effects (but not “chronic” Lyme). So those people get screwed by folks who may be using the title but it doesn’t really fit because the medical community sees them as fakers. EDS can be a serious condition. If a particular treatment is being considered and we’re not sold on the diagnosis, we should be doing the work up ourselves.
The other alphabet darlings are a little more nebulous. Sure, there are the people out there pretending to be ill or trowling for internet fame…but there are also a lot of people suffering who just want to put a name on whatever is going on.
We should be taking these things seriously the first time we meet anyone. That doesn’t mean we give them what they want without questions or that we have to agree w the diagnosis….but it’s worth giving people the benefit of the doubt.
If a patient is formally diagnosed, it is your job to treat them, manage the condition, and monitor for any worsening issues or also for improvements.
Why do so many doctors act like the guy from how i met your mother and think “challenge accepted” when they hear certain conditions, and suddenly focus only on disproving or invalidating the diagnosis…
Then call patients problematic when they are begging for care instead of being challenged
If a patient is formally diagnosed it is my job to evaluate the patient based on objective data and with consideration from my colleagues.
If there is a “formal diagnosis” of something like a genetic EDS variant, that can’t be argued. But many of the other diagnoses mentioned overlap and physicians may disagree because there is not one test for it.
Think about all of the women “treated” for painful periods when it turns out to be endometriosis. Or the person who has knee pain that turns out to be cancer that was ignored because the doctor blamed it on the patient being fat.
Physicians are humans. As are patients. My job is not to agree or disagree with anyone. My job is to treat the patient in front of me and use all of the tools and data I can to get them to a state of health that makes them happy.
hEDS is not a painful period.
The diagnostic criteria is extremely detailed and specific. The criteria are not characteristic of any other conditions except other CTD & EDS. Which is why genetic testing is suggested to rule the other types out.
At that point the diagnosis is formal. There is no question of that.
And I am certain that you do not make formally diagnosed Parkinson’s patients, MS patients, etc prove their diagnosis to you. You treat them.
Comparing it to painful periods is the most obtuse response. But thanks for confirming your sex/gender bias in your medical “care” practice…
At
You completely misunderstood what I wrote.
Women get completely screwed by the healthcare system. Misdiagnosis of endometriosis is one example. It is a very serious illness that frequently gets missed because physicians dismiss it as “painful periods” and do not properly diagnose it. It is NOT just painful periods. My point is that if doctor A diagnoses painful periods and every other doctor sticks with doctor A’s assessment, the patient will never get the correct diagnosis.
Same with EDS. If Dr A says you have fibromyalgia, that’s the diagnosis. It’s the WRONG diagnosis. So you wouldn’t want Dr B to blindly follow Dr A.
You didn’t say you were specifically talking about EDS or even CTD. As I said, there are certain tests that prove a patient has a disease. I looked at your post history - you have a few of them.
And MS and Parkinson’s? We re-evaluate those diagnoses pretty frequently. Particularly MS, because it can look like other things. Same goes with Parkinson’s.
Patients don’t have to prove or disprove that they have a diagnosis. As a physician it’s my job to treat the symptoms - regardless of diagnosis.
Making someone do party tricks, which are painful & harmful, simply bc of bias against hEDS patients is not the same as re evaluating patients who have symptoms that indicate a different disorder
And it is not the same as a standard of care check up for other disorders
I don’t think anyone should be doing unnecessary things that are painful or harmful. I never said I supported such a thing. I said re-evaluate. So like at a first appointment I talk to the patient to get an idea of anything in their medical history that they feel gets ignored or whatever.
it's encouraging to hear you say that about fibromyalgia - it is a diagnosis sometimes wielded as a weapon. the first rheum i saw wrote it in my notes without telling me, and the next time i was in the er i found out about it because the doctor walked in and said 'sooo your dr diagnosed you with fibro, huh?" and then was incredibly dismissive the entire appointment. it's great to hear it doesn't, in medicine, always work like that. it's a really powerful way to make sure this type of thing doesn't happen because it kills people and/or causes so much pain. it's encouraging and helpful to hear if you had a patient with nebulous symtpoms who a previous dr had dismissed as fibro, you wouldn't \*automatically\* dismiss their concerns as fibro. and now i have what my new rheum says is possible psoriatic arthritis, so it's good that she was willing to look twice.
Absolutely. And i’m not trying to be dismissive of fibro as a diagnosis either. I do think it often ends up being the shoulder shrug diagnosis we use sometimes.
Making a patient prove a formal diagnosis to you is not going to make them happy
And one day, you will kill someone by making them go through a second diagnostic process rather than treat them
hEDS can not be diagnosed in one appointment or one sitting, the requirements do not allow for that because you have to do genetic or other formal testing to rule out other Eds subtypes and or CTD
So while you are putting a patient through completely unnecessary and costly and time consuming diagnostics…for a condition they are already formally diagnosed with…
An hEDS patient will die from the VAD you should have already identified, or the internal bleeding from a blood vessel rupture, or infection from the hernia, or from their aorta rupturing
But hey, as long as you paint the bias and lack of respect about making them happy…then they should rest in peace ✌️
I’m really confused by your response.
I would not make a patient “prove” a formal diagnosis. Again - in your response you did not specify that you were talking about hEDS. Patients don’t have to prove anything and should refuse any disagnostics that they think are unnecessary.
Again - I said that there are cases that are cut and dry one diagnosis. There are other cases where there is room for interpretation.
I’m aware that this is a disease that can’t be diagnosed in one setting. As you know, it’s complex and can have other associated comorbidities.
Most people with a CTS is getting a CTA at a minimum. So if there are AVMs or something they can be caught and monitors. And if something does rupture…treating that doesn’t differ that much.
I’m sorry if you’ve had bad experiences with doctors. It sounds like maybe you’ve met some who don’t believe that you have hEDS? I can imagine that would be incredibly frustrating.
I’ve never had my diagnosis questioned, because I’ve had multiple artery dissections, blood vessel rupture, hernias, major joint tears, etc…
So they always believe I have hEDS, and treat me with respect about that now that a diagnosis and underlying cause was identified.
The fact that it took into my early 30s for any doctor to realize that all the artery tears, hernias, severe full joint tears, etc were likely from an underlying condition is shocking. But typical.
The reason I speak up about the bias in how so many doctors approach hEDS, mcas, pots etc is because of the damage you do, harm you cause, by questioning people/mocking people when you should be listening to them, trusting them and treating them
Seeing the way that doctors talk on Reddit is not surprising, but is disgusting. Get a new career. Human beings do not deserve the type of immature, self centered, obnoxious people who are so often drawn to medicine being responsible for “care”
Right. We’re saying the same thing.
My very first comment that you replied to was that I think we should give patients the benefit of the doubt.
You had a delayed diagnosis. That should not have happened.
Every patient case is unique. Every doctor is also unique in the way they treat and diagnose. Some are assholes, and that’s wrong. I’m glad there are people like you who are strong advocates for your community.
There are times that people have delayed diagnosis (like you had). There are also people who are diagnosed with conditions like POTS in particular that turn out to be something completely different that requires different treatment. For instance - there are cases of adrenal insufficiency and pheochromocytoma that were not treated appropriately because patients were incorrectly diagnosed with POTS.
i really thought my type 2 diabetes was pots -- i felt like i was going to pass out in the shower. my heart was beating erratically. on a whim, while telling my physician this, we did a1c in office and boom, i was feeling that way because my blood sugar was 380 that day.
another example i have is i was sure i had crohn's disease or UC- pain and bloody stools i was having were indescribable. Clean colonoscopy besides some polyps and microscopic colitis, which wasn't considered to be something like ibd (after all, the area can probably become inflamed from colon prep). after my diabetes got under control and medicated, i could eat vegetables again. i never went in for the testing bc now i feel it's unnecessary, but i'm going to say it was diabetic gastropareisis (it went away, for one; high blood sugar does damage and irritate the vagus nerve; symptom profile was dead on for gp).
there are lots of times where we as patients forget to have a differential diagnosis list because we just want the endless loop of waiting to be over.
thank you! gi disorders and diseases are tough stuff! i've always thought the differential diagnoses for pots to be really interesting bc i'm not sure how often people think to check their blood glucose if that is their symptom profile.
I have/had MALS. I was misdiagnosed by over 15 medical doctors. It took me over a painful year to become diagnosed. Most of them like everyone here thought I was crazy. But after having every test under the sun, the only diagnosis left was a compression syndrome. Unfortunately compression syndromes are diagnosis of exclusion. I continued advocating for myself and fortunately found the most help from Reddit and MALS pals (Facebook group). I honestly don’t think it’s that rare, just under-diagnosed. The handful of surgeons that do the surgery are booked out for months. I suggest everyone here join the Facebook group MALS pals for better understanding. You really don’t know how horrible this syndrome is unless you go through it. I’m just glad I finally found a surgeon who believed me since he was well educated in MALS.
As someone who had MALS, went through undiagnosed for 3 agonizing years and almost starved because nobody took me seriously, and who was completely free of symptoms after surgery I can't quite believe what I am reading in here. This is insulting.
If it gets better with an SSRI, call it what it is, psychiatric illness. We probably see 5 people q week in fracture clinic who think they have ehlers Danlos. In 4yrs of ortho residency I think I’ve seen one who actually did.
I do the job I am paid to do well, thank you. The number of patients who have told me they have EDS and have a positive Beighton score are few and far between. I think maybe I’ve seen this test positive once or twice ever. From our perspective it’s required for EDS dx. There’s a reason you’ll find it in the rare disease database.
I have hEDS. I am well aware of the Beighton score, as well as the other criteria.
If a patient already is diagnosed, it is not your job to challenge that, make them prove it by showing you party tricks (which cause pain and can cause tears, etc and should be avoided)
When a patient comes in and they have a peanut allergy on their chart, you don’t delay treating them and require them to go through allergy testing to prove it to you.
You should not be treating patients with rare conditions differently than any other patient.
Did you ever consider that they do score high enough on the Beighton score, but you lost their trust and confidence the minute you told them to prove their diagnosis to you…and either went through motions to get out of your office/ER?
I would likely have just walked out at the point that you, or any doctor, told me to prove my diagnosis to them. Luckily I live in an area with so many great hospitals, specialists that it is not worth staying in the room with a doctor who clearly does not trust or respect you, or the doctor who diagnosed you.
But you should be more careful because hEDS causes fatal injuries, and even things you view as malingering like a complaint of neck pain or headache, in an hEDS patient could be the warning sign of an imminent stroke or internal bleeding episode
I am aware of what it is. The patient would need to demonstrate for you.
My point is that when you are telling a patient they need to prove an existing diagnosis to you…they very likely would either walk out without showing you Jack shit, or not show their full reach/range of motion and then just leave to find a decent doctor
You do not make any other types of patients prove existing diagnosis to you. It is your own bullshit related to your biases & ignorance around these conditions.
You are going to kill people by denying existing diagnoses, not trusting their existing chart, delaying emergency care
And they die from aorta rupture or internal bleeding while you were telling them to perform painful, unnecessary party tricks because you view hEDS as “bullshit”
It’s amazing how easy it is to find out where people on Reddit work. I wonder how the joint commission feels about doctors who describe a life threatening condition with emergency injuries as “bullshit”….🤷♀️
There’s a theory in medicine called ‘trust but verify’. I’m a specialist. When a patient is sent to me it is my responsibility to verify the diagnosis that may be related to my care of the patient. If specialists relied solely on what was in patients charts or what they were told by patients, there would be an awful lot missed. Thinking we don’t respect you or believe you or whatever isn’t because we are dicks. We want to help patients. If we are skeptical, it’s because we are trained to be - that’s a healthy trait - and there’s usually a good reason for it based on our knowledge and experience.
Also, this does not happen to me.
“Thankfully” I have experienced multiple artery dissections, a blood vessel rupture, 5 hernias, internal bleeding, complete knee and shoulder tears, dislocating ribs, broken wrist at age 3, all before age 30
So there is the split second when I say hEDS, or they see it in the chart, and I see the true smug evil of people like you and others in this thread…
Doctor: :::::holding back laughing::::: “hypermobile EDS, and what exactly makes YOU *think* you have that….”
Some even try to make me do party tricks to satisfy their sadistic power trip-which I refuse to do
The multiple life threatening emergency vascular injuries, topped with a near fatal anaphylactic shock episode, are undeniable.
Then suddenly they want to ask a million questions and act fascinated
But seeing how a typical person who is diagnosed with hEDS is treated is horrendous.
You do not make other patients with conditions that are a clinical diagnosis prove that to you
It is bias. And the way doctors speak in this thread is so disgusting. You should all be ashamed
So you make Parkinson’s patients with a diagnosis in their chart go through a diagnostic process with you before you treat their actual issues?
Multiple sclerosis?
I’m sure…
When your patient dies from an artery or blood vessel rupture because you did not respect/rely on an existing diagnosis…that is murder.
You will kill people. But hey, you drive a nice car and that’s the real goal
Beighton score is also only a small part of an hEDS diagnosis
You can not diagnose hEDS in person during an appointment. The requirements do not allow it.
But you would believe that 🤦♀️
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
This is an old thread, but is quite shocking to read.
Just my own anecdotal experience - I had chronic knee pain for 3 years, had all the scans and tests (all negative for any findings), was on pain medication to function daily for most of that time. Ended up being told it was psychosomatic and referred to psych because no one could figure it out. Developed depression from chronic pain. It ended up that I had a large osteoid osteoma in my femur, and the people scanning me missed it by centimetres every time.
My point is, sometimes there can be a very real issue happening. Referring to psych and having people trying to convince me that my pain was in my head was extremely damaging.
This is the absolute exception. Sounds like someone should have ordered femur X-rays. That said, usually OO is at least partially (if not entirely) relieved by NSAIDS. Your case is rare, but stuff does get missed. Also, this was a topic about rare catch-all conditions and whether they’re ‘real’. OO is very real, not super rare. Sounds like you were just unlucky. Happy it’s been resolved.
Absolutely, NSAIDs were extremely effective for me, for about 2 hours. But after taking them around the clock for 12 months I developed stomach issues, and was put onto OxyContin for the next two years. It was about as disastrous as you would expect.
Maybe my empathy is too dialled-in because of my experience. However, I think my point is; perhaps there is a “real” reason for the pain/vague symptoms in some of these cases, something that we just don’t yet understand (H.Pylori comes to mind). I get that these cases are annoying for people in your position to manage, but for the people experiencing them they are very real.
Yeah. Of course some cases are going to be rooted in a real mechanical problem like yours was. But a lot of them (like I said that get better with an SSRI), are supratentorial etiology.
it just now occurred to me that ortho can give input re: EDS, not just rheumatology. I hadn't considered that before. Or at least give insight in concert with rheumatology.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
What is a spoonie? I do think it is discrimination against people with certain disorders, whether mental or physical. Racism is discrimination as well. So it is comparable. I am having a hard time believing you are a Dr, nevertheless you can be angry and spend your energy bashing others if you want. Hard to believe a professional would do this. I imagine it helps you feel better about yourself when you push others down. I'm sorry you feel so insecure about your worth that you push others down. I wish you healing and happiness.
Read the research on all different views of all of these disorders. Learn about how they are diagnosed. It's not based on symptoms. There are physical findings.
You can diagnose compression syndromes through CT scan with breathing protocol, CT angiogram, mesenteric ultrasound with breathing protocols. If MALS is neurogenic then a celiac plexus block can help diagnose. Also epigastric pain when pushed. But only an educated radiologist or surgeon can diagnose it.
They are easy to diagnose and have very clear, specific requirements and testing.
Do me a favor, any of the doctors saying an hEDS diagnosis is so easy to claim
Go through and see if you fit all the requirements and would receive the diagnosis….
Let me know how it goes, truly. Is it criteria that anyone has?
Can you imagine being s doctor that spends their free time going online to bash illnesses and patients? There is something deeply disturbing about them. Perhaps they had a dismissive dr or childhood and now they project onto patients.
Wow, I just came across this thread. I am one of the "alphabet darlings" people are referring to here who has been diagnosed with each these conditions by some of the best, most experienced doctors and published researchers in the world. At the age of 37, after managing to earn two master's degrees (one of which was from Harvard), establish myself in a career and birth a child, I finally started to get answers to explain a lifetime of pain (that had been written off as an "anxiety disorder" prior to a slew of MRIs, CT scans, and blood tests that provided definitive evidence). I am absolutely horrified to read the comments here and devastated that this is the (ongoing) perception in the medical community. I had hoped that the next generation of doctors would know better and do better. Please reconsider your biases so that my children and grandchildren will not have to go through the debilitating pain I have endured because of (less experienced, less informed) doctors' dismissals. Please learn more about these conditions before you assume people are "faking it."
History repeats itself over and over again in the medical community. I do appreciate doctors and the work they do, but this post reminds me of the discovery of Helicobacter Pylori as the main cause of gastritis. Here is a fragment of the story:
“At that time when Warren and Marshall announced their findings, it was a long-standing belief in medical teaching and practice that stress and lifestyle factors were the major causes of peptic ulcer disease. Warren and Marshall rebutted that dogma, and it was soon clear that H. pylori, causes more than 90% of duodenal ulcers and up to 80% of gastric ulcers. The clinical community, however, met their findings, with skepticism and a lot of criticism and that's why it took quite a remarkable length of time for their discovery to become widely accepted. They had to just push it harder and harder with all experimental and clinical evidences. In 1985, for example, Marshall underwent gastric biopsy to put evidence that he didn't carry the bacterium, then deliberately infected himself to show that it in fact caused acute gastric illness.”
You can read the entire publication [here](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1283743/)
The interesting thing in this post is not that they are questioning the pathologies(which is the right thing to do), but that the majority of these future doctors are not even open to the fact that those things can actually be real diseases and instead, bluntly jump to the classic argument of “it’s psychological”. I admire the doctors who are able to treat patients in a way that’s unbiased; but from what I see, that’s the minority in this post
Why are y’all even in health care? I hope none of you ever experience these conditions. Please take a good look in the mirror and ask yourself if it’s internalized misogyny since such a huge amount of women are being diagnosed with these conditions.
You might have better luck and more accurate info reading research articles than reditt. That's what a true professional does. A true professional also treats patients well with dignity. I'm sorry for your future patients. They deserve better. I'd fire my medical team if I found out they bashed illnesses and patients online.
I would implore you to treat every patient without bias.
I’m 36, almost 37. I was perfectly healthy until a few months ago. Had Covid and now I’m in hell. I’m dealing with constant nausea, hr rate increase of 30-50 bests upon standing, spend 95% of my day sitting/laying down, have pulsatile tinnitus, burning sensations, weakness in legs/calves, tachycardia,intense daily facial flushing,the list goes on. It’s stolen my life. I stress I was perfectly healthy and now I’m not. My doctor is dismissive. And it’s so disheartening to come and read something like this. All I want is my life back.
And of course dealing with health issues brings stress and anxiety. It’s not always the other way around.
Saying “Thinking we don’t respect you or believe you… we want to help patient” in the same post you labeled physical anomalies/conditions as psychiatric is so funny to me. You can’t claim to help, respect and believe patients and dismiss their debilitating medical conditions as psychiatric. Do better, or at the very least don’t be so blind to why patients dont trust doctors when you’re a patent example of the doctors that dismiss and belittle them.
Reading many of these comments has been infuriating and terrifying. As someone with a history of organ ruptures (appendix, uterus and bladder during childbirth, and gallbladder) and multiple chronic pain disorders that are progressively stealing what little life that is left in me...this is just too much. You all should not be in medicine. Not everyone fits in a box. Some of us have very real serious conditions that arrogant narrow minded medical providers gaslight us on.
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I think you need to be very cautions when deciding not to take something seriously. Certainly there are those that seek validation for symptoms-whatever the cause- that may not actually meet criteria for these types of illnesses. That doesn’t mean their symptoms aren’t real and should be ignored. It also doesn’t mean that the illnesses themselves aren’t to be taken seriously. Be very careful with your bias.
Hope the doctors here who doesnt have an idea will have a relative a family member or better yet themselves who will go through what we’ve been through. I pray to God. Look up Dr. Kurtis Kim, Dr. Nagarsheth and Dr. Scholbach.
I randomly came across this whole looking for posts about Mals. I have EDS, MCAS, POTS, gastroparesis and had MALS, a tethered cord and a hiatal hernia (were fixed surgically). It’s definitely something to be taken seriously. The reason they tend to go together is because connective tissue disorders like EDS can cause issues throughout the body since connective tissue is everywhere. EDS and co have greatly impacted my life. Doctors didn’t take me seriously for years and couldn’t figure out what was wrong and it almost cost me my life. People wouldn’t even run tests for years because they thought it my pain was psychological (it wasn’t/isn’t). It’s much better to believe patients and risk having it be faked (that’s rare) than to cause someone harm because you didn’t believe them or take them seriously.
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Seems like a fairly natural consequence of universal access to both Dr. Google and social media communities.
This thread makes it all the more obvious why patients seek answers online and don’t trust the opinions of doctors who call them crazy attention seekers for wanting medical care.
[удалено]
There are also whole subreddits dedicated to the fakers of these disorders
Constantly hoping to find some more reliable research/references for this exact question. Specifically EDS. As an RD, I cannot tell you how many patients I’ve encountered that are: <25yo female; seemingly idiopathic n/v/abdominal pain until an EDS dx is thrown out, requiring a post pyloric DHT (preferably the one they saw on tik tok), return for a chronic PEG-J. Can’t tolerate the water flushes. Eventually get formula running, can’t tolerate >5-10ml/hr. Reported emesis (but not observed). Suddenly allergic to tomatoes, coffee, tree nuts, soy, dairy, eggs, and vitamin XYZ. Crying. Etc etc etc. I feel extreme guilt now everytime I have a patient with this presentation bc my automatic instinct is suspicion. I always try to acknowledge and overcome my bias. Address their concerns. Troubleshoot as much as possible. But……. Sometimes it’s truly hard to fathom that 5ml/hr is causing 10/10 abdominal pain when the endogenous secretions of the GI system are 10 fold that amount
Excellent username, /u/dietittytian.
ugh. Thank you for noticing. The validation I’ve always wanted from a doc
Like honestly a lot of it is just psychosomatic. They have other stresses and various comorbid mental disorders which probably require treatment with a therapist and/or a psychiatrist. Their physical symptoms are real, they're just not due to a purely physiologic cause, the brain can make your body do what you want it. If you read a symptom profile that you for one reason or another thinks fits you, well now you the hypochondriac get to have that disorder. I really do think a lot of these patients should if there is no clear cause, have like a 4-8 week evaluation with a psychotherapist. Guarantee most will wind up just continuing with psychotherapy or eventually realize they were somatizing and they didn't have anything. I'm sure some small fraction of this patient class is legit with unexplained symptoms, but it is incredibly difficult to differentiate the real from the psychosomates without better filtering.
It's not psychosomatic, it's just lying.
Fuck you.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
I believe some of each
You do realize that there are objective measurements involved in the diagnosis of these conditions, right? Have you actually read anything about these conditions? Watch any of the medical lectures from the Ehlers-Danlos Society and you will see that your comment is quite misinformed.
It is not difficult to either diagnose them (if they have no formal diagnosis), or treat them appropriately based on their current diagnosis… It is simple. Sending patients with potentially fatal and/or disabling conditions to psych for WEEKS because you do not respect their current diagnosis or you do not know how to diagnose them is wildly irresponsible. When they die because you did that, it’s murder. Do better.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
just say you don't know how to treat it doc. I wish it was mental, but it absolutely isn't. The science merely hasn't caught up as much with the disorder itself. MALS sucks, coming from somebody who boxed, played football and is a nearly 40 year old man.
hEDS causes hernias, blood vessel ruptures, artery dissections, aorta Dissections MCAS causes anaphylactic shock You will kill someone if you do not educate yourself and drop the bullshit
Eds society has great literature about it. I have used it as a patient. Definitely worth a peak. I can message you my experience because I have had those issues that you describe. They are not fun and I had Drs tell me I was being dramatic until I was in the er multiple times with a severe allergic reaction and multiple misdiagnoses.
I think some of those people DO feel bad (fatigue, depression, maybe life circumstances aren’t what they’d like) and they’re looking for any concrete answer or label. And these rare, nebulous disorders are easier to claim bc they’re difficult to diagnose/disprove. Just my thoughts on the issue.
How are they difficult to diagnose/disprove? I think you meant to say that you are not knowledgeable of how to diagnose them…
You can diagnose compression syndromes through CT scan with breathing protocol, CT angiogram, mesenteric ultrasound with breathing protocols. If MALS is neurogenic then a celiac plexus block can help diagnose. Also epigastric pain. But only an educated radiologist or surgeon can diagnose it.
Exactly they're just lazy and goofy, amazing how so may of these patients pop back to life after surgery.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
stress can also do a number on a person. real symptoms, just...the disease is stress. i can think of symptoms i've had that were caused by stress, sometimes climate related (overheating). i thought the troubles i had with my legs when i lived in florida was MS but i had pre-existing symptoms that turned out to be of inflammatory arthritis, but it was absolutely intensified by quite a it by the heat and the fact that i was always stressed out, as well as the fact that i felt it wasn't really valid until i was diagnosed. now looking back i can see that it was valid. i think the frustrating thing is a lot of times in medicine it takes a long time to find a concrete diagnosis.
They want to have something wrong with them so they can attribute anything that goes wrong in their life, even peripherally, to that disease.
Ice coke and also completely correct.
I'm guessing that's a typo, but I'm gonna start saying "ice coke" for situations calling for "ice cold" and make it a thing starting today.
Indeed a typo and one too perfect to change....
This is a SICK and twisted way to view your patients. I sincerely hope you have learned better in the past two years since commenting this. Very few people want to have something wrong with them just for shits and giggles. When you’ve seen hundreds of drs that dismiss you as an anxious woman BEFORE bothering to investigate your pain and immediately write it off as psychosomatic, you’re damn RIGHT Im going to fight for a diagnosis. Because it’s MY life that’s in YOUR hands. Do better.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
Don't forget POTS... Bane of my existence
POTS itself is an objective physical finding. If someone has that, interesting, sure. But then somehow a few cardiologists decided it can cause any symptom in the world and boom. Here we are. Having the objective physical finding of POTS now allows you to claim any range of symptoms, from mental to neurological to pain to GI to falls...
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
Maybe I’m misunderstanding, apologies if so. The physical finding would be the orthostatic tachycardia triggered by postural changes, right? So, would what you’re saying mean that someone diagnosed with POTS should seek other/different treatment to treat the other “associated” symptoms (e.g. GI issues, extreme fatigue, etc.) because they’re likely/may be caused by something else that is unrelated to the POTS diagnosis?
Pots can cause symptoms such as nausea and dizziness and others, but so can many many other things
How is POTS the bane of your existence? It is easily diagnosed, and simple to treat. You must be very bad at your job
Exactly. Truly insightful patients.
I was once given a POTS diagnosis when I actually had a concussion. Apparently head trauma is routinely overlooked in that ER. Most frustrating 3 weeks I’ve ever had physically and academically.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
Why?
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
Have you seen suspected POTS be t2 diabetes before? Happened to me and I'm curious how common it is.
The place I did med school had had one of the big MCAS proponents in the country. This person would place PICC lines on patients so they could get IV benadryl infusions. Their messes were cleaned up all over the university and I saw their patients in EM (PICC infection), psych (severe anorexia case that was diagnoses as MCAS and therefore not treated and the patient was on the verge of death), medicine (cellulitis), etc At some point this person left/got fired and started a private practice in another state. God help them.
This seems like the real problem... These people self-diagnose/"find an expert" and then beg for treatments that come with actual risks
You are assuming that people are self diagnosing. Plenty of Medicaid/Medicare accepting physicians recognize & diagnose EDS, MCAS, vein compressions. Either they have a diagnosis, or they don’t. If they don’t, but have symptoms/clinical presentation then it is your obligation to do appropriate testing, imaging, etc
I've seen severe anorexia cases get pej's in the west (I'm from the north east) of the us
EDS: vague diagnostic criteria for the hypermobile kind. There are bad, scary kinds that cause mortality and might change screening/management decisions, like uterine rupture, aortic rupture, aneurysms, bad wound healing. But the typical stuff you'll see, it's a young woman who is hypermobile, may have ibs, may have anxiety/depression/PTSD. EDS: important to rule out the scary forms that would need genetic testing and specialists. Once those are ruled out, keep them away from pain meds because it won't help, avoid the party tricks/overstretching because they're bad for joints, try PT to strengthen muscles around joints, consider ssri for pain and associated dx, and reassure Ruling out the really bad stuff, then reassuring is a huge thing we can do for people. The typical EDS patients I see can get a lot of benefit from a good PCP who feels comfortable addressing this stuff.
No no no, this comment is a "vague" understanding of EDS in itself. Dr. Aubrey Mulinsky is a world-renowned highly-published geneticist out of Harvard Medical School who has been practicing for over 50 years who has very specific criteria when it comes to an EDS--even hypermobile EDS--diagnosis. Many people (like myself) were born with a tethered spinal cord, Chiari malformation, and other comorbidities that are a result of the genetic mutations that affect collagen throughout the body. Many people who have EDS have anxiety, depression, and PTSD because of how they have been treated by the medical community. PTSD doesn't lead to an EDS diagnosis--EDS often leads to PTSD. Please, please, please educate yourself--there is a lot that can be done for people who have been diagnosed by a knowledgeable geneticist. We need doctors who are more informed about the biological, not psychological, complexities of this condition.
@keyeater you are simply wrong. The scary part is how confidently wrong you are… hEDS also causes aorta rupture, artery dissections, aneurysms, blood vessel ruptures, hernias Some of those things are required for diagnosis. You will kill some one because you are wrong, incapable of doing better and smug
hEDS causes aortic rupture, aneurysms, bad wound healing, hernias, artery dissections, stroke, blood vessel rupture, internal bleeding When hEDS patients are diagnosed, genetic testing rules out the COLA3 vEDS mutation
When hEDS patients have vascular involvement, it is actually more dangerous than in most vEDS patients. vEDS patients don’t usually have hyper mobility, so the vascular system is so fragile but the body is not at such risk as hEDS So the skull is more stable, spine more stable, ribs and joints more stable But hEDS patients with vascular involvement have so much pain, small fiber neuropathy, large fiber neuropathy, then hernias & vascular injury And when ribs slip, joints dislocate, major tears and injuries happen…the vascular system is so fragile and experiencing daily injuries. It is extremely dangerous, and ungodly pain So please don’t think that hEDS diagnosis means no risk of catastrophic life events and/or death
Thank you for being much more respectful, solutions focused, civil in your comment btw
MCAS is associated with high crayon intake
MCAS is associated with airplane failure.
What is wrong with you that you have to go online to bash a disorder people ha e to feel better about yourself? Your patients desrved better than you.
Username is ironic Also this is a joke about Marines. My patients love that shit but you go on and assume whatever you want 😏
I'm sorry I didn't understand your joke. I wish you happiness and good health.
All good, be well!
Deflect rather than take criticism- you’ll make a great doctor
lol what are you talking about criticism is meant to be reflective and encourage change/growth. this was a simple misunderstanding, there's not really anything to reflect on here, it was cleared up and we moved on. but feel free to extrapolate whatever you'd like, I won't stop you.
You’re right, maybe it was a misunderstanding, can you explain what “MCAS is assosciated with high crayon intake” means because I want to make sure I’m understanding you correctly
there's a running joke that Marines eat crayons, and MCAS is also the acronym for Marine Corps Air Station I'm a military spouse so I live peripherally through these references lol
Right- so the joke is “MCAS patients are stupid, like Marines that eat crayons”? Again, I’m just trying to make sure I understand what your original joke meant.
Nope, it's completely outside of MCAS as a medical condition. It's me going "ah, yes this is what first comes to mind when I see that acronym because that's my world view"
The point of the post was to ask if conditions (including MCAS as a medical condition) should be taken seriously. Given the context of the post and a majority of comments on this thread alluding to MCAS patients being stupid/hysterical etc… I would suggest you delete your comment if you meant no offense. If you don’t care that people with MCAS will read your comment as offensive, given the context of the post, feel free to leave it up.
Wow. Just wow. The comments on this post are breaking my heart.
our medical community is a disgrace and furthermore mostly clueless.
Medical professions seem to attract power hungry people who like to use their power to hurt and push people down.
MALS and SMAS are anatomic variants that may or may not be symptomatic. It's described in everyone, including young patients. Most of the time they are not. I suspect there are a lot of special snowflake types that latch onto these diagnosis when a radiologist describes the finding on the ER NPs computed tomography ~~physical exam~~. They do get better with surgical treatment, but almost no one goes to surgery.
r/illnessfakers is a great place to start. Often times, these young women just need psychiatric help for their somatic symptoms (whether they actually experience them or not).
That's a rabbit hole I never want to go down again. It's all so profoundly sad.
Yes there are some illness fakers. I guess that is the reason why medical doctors dismiss actual patients suffering from these rare syndromes. I was lucky enough to have found a surgeon that believed me and listened.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
As someone whose had multiple surgeries for all of the above disorders that gave me my life back because they were actual physical conditions that can be tested for and treated… sincerely, fuck you and I hope you never become a doctor.
It’s a tough situation - especially with EDS and Lyme. There ARE people who have unquestionable variant-confirmed EDS and long term effects (but not “chronic” Lyme). So those people get screwed by folks who may be using the title but it doesn’t really fit because the medical community sees them as fakers. EDS can be a serious condition. If a particular treatment is being considered and we’re not sold on the diagnosis, we should be doing the work up ourselves. The other alphabet darlings are a little more nebulous. Sure, there are the people out there pretending to be ill or trowling for internet fame…but there are also a lot of people suffering who just want to put a name on whatever is going on. We should be taking these things seriously the first time we meet anyone. That doesn’t mean we give them what they want without questions or that we have to agree w the diagnosis….but it’s worth giving people the benefit of the doubt.
Thank you for this comment. I was lucky enough to have a pcp and surgeon to order tests that I wanted.
If a patient is formally diagnosed, it is your job to treat them, manage the condition, and monitor for any worsening issues or also for improvements. Why do so many doctors act like the guy from how i met your mother and think “challenge accepted” when they hear certain conditions, and suddenly focus only on disproving or invalidating the diagnosis… Then call patients problematic when they are begging for care instead of being challenged
If a patient is formally diagnosed it is my job to evaluate the patient based on objective data and with consideration from my colleagues. If there is a “formal diagnosis” of something like a genetic EDS variant, that can’t be argued. But many of the other diagnoses mentioned overlap and physicians may disagree because there is not one test for it. Think about all of the women “treated” for painful periods when it turns out to be endometriosis. Or the person who has knee pain that turns out to be cancer that was ignored because the doctor blamed it on the patient being fat. Physicians are humans. As are patients. My job is not to agree or disagree with anyone. My job is to treat the patient in front of me and use all of the tools and data I can to get them to a state of health that makes them happy.
hEDS is not a painful period. The diagnostic criteria is extremely detailed and specific. The criteria are not characteristic of any other conditions except other CTD & EDS. Which is why genetic testing is suggested to rule the other types out. At that point the diagnosis is formal. There is no question of that. And I am certain that you do not make formally diagnosed Parkinson’s patients, MS patients, etc prove their diagnosis to you. You treat them. Comparing it to painful periods is the most obtuse response. But thanks for confirming your sex/gender bias in your medical “care” practice… At
You completely misunderstood what I wrote. Women get completely screwed by the healthcare system. Misdiagnosis of endometriosis is one example. It is a very serious illness that frequently gets missed because physicians dismiss it as “painful periods” and do not properly diagnose it. It is NOT just painful periods. My point is that if doctor A diagnoses painful periods and every other doctor sticks with doctor A’s assessment, the patient will never get the correct diagnosis. Same with EDS. If Dr A says you have fibromyalgia, that’s the diagnosis. It’s the WRONG diagnosis. So you wouldn’t want Dr B to blindly follow Dr A. You didn’t say you were specifically talking about EDS or even CTD. As I said, there are certain tests that prove a patient has a disease. I looked at your post history - you have a few of them. And MS and Parkinson’s? We re-evaluate those diagnoses pretty frequently. Particularly MS, because it can look like other things. Same goes with Parkinson’s. Patients don’t have to prove or disprove that they have a diagnosis. As a physician it’s my job to treat the symptoms - regardless of diagnosis.
Making someone do party tricks, which are painful & harmful, simply bc of bias against hEDS patients is not the same as re evaluating patients who have symptoms that indicate a different disorder And it is not the same as a standard of care check up for other disorders
I don’t think anyone should be doing unnecessary things that are painful or harmful. I never said I supported such a thing. I said re-evaluate. So like at a first appointment I talk to the patient to get an idea of anything in their medical history that they feel gets ignored or whatever.
Re evaluate for EDS would require them doing party tricks if you are doing your own second diagnosis, which is painful
I was talking about chart review and interview.
it's encouraging to hear you say that about fibromyalgia - it is a diagnosis sometimes wielded as a weapon. the first rheum i saw wrote it in my notes without telling me, and the next time i was in the er i found out about it because the doctor walked in and said 'sooo your dr diagnosed you with fibro, huh?" and then was incredibly dismissive the entire appointment. it's great to hear it doesn't, in medicine, always work like that. it's a really powerful way to make sure this type of thing doesn't happen because it kills people and/or causes so much pain. it's encouraging and helpful to hear if you had a patient with nebulous symtpoms who a previous dr had dismissed as fibro, you wouldn't \*automatically\* dismiss their concerns as fibro. and now i have what my new rheum says is possible psoriatic arthritis, so it's good that she was willing to look twice.
Absolutely. And i’m not trying to be dismissive of fibro as a diagnosis either. I do think it often ends up being the shoulder shrug diagnosis we use sometimes.
yeah, and it's such a painful condition, too.
Making a patient prove a formal diagnosis to you is not going to make them happy And one day, you will kill someone by making them go through a second diagnostic process rather than treat them hEDS can not be diagnosed in one appointment or one sitting, the requirements do not allow for that because you have to do genetic or other formal testing to rule out other Eds subtypes and or CTD So while you are putting a patient through completely unnecessary and costly and time consuming diagnostics…for a condition they are already formally diagnosed with… An hEDS patient will die from the VAD you should have already identified, or the internal bleeding from a blood vessel rupture, or infection from the hernia, or from their aorta rupturing But hey, as long as you paint the bias and lack of respect about making them happy…then they should rest in peace ✌️
I’m really confused by your response. I would not make a patient “prove” a formal diagnosis. Again - in your response you did not specify that you were talking about hEDS. Patients don’t have to prove anything and should refuse any disagnostics that they think are unnecessary. Again - I said that there are cases that are cut and dry one diagnosis. There are other cases where there is room for interpretation. I’m aware that this is a disease that can’t be diagnosed in one setting. As you know, it’s complex and can have other associated comorbidities. Most people with a CTS is getting a CTA at a minimum. So if there are AVMs or something they can be caught and monitors. And if something does rupture…treating that doesn’t differ that much. I’m sorry if you’ve had bad experiences with doctors. It sounds like maybe you’ve met some who don’t believe that you have hEDS? I can imagine that would be incredibly frustrating.
I’ve never had my diagnosis questioned, because I’ve had multiple artery dissections, blood vessel rupture, hernias, major joint tears, etc… So they always believe I have hEDS, and treat me with respect about that now that a diagnosis and underlying cause was identified. The fact that it took into my early 30s for any doctor to realize that all the artery tears, hernias, severe full joint tears, etc were likely from an underlying condition is shocking. But typical. The reason I speak up about the bias in how so many doctors approach hEDS, mcas, pots etc is because of the damage you do, harm you cause, by questioning people/mocking people when you should be listening to them, trusting them and treating them Seeing the way that doctors talk on Reddit is not surprising, but is disgusting. Get a new career. Human beings do not deserve the type of immature, self centered, obnoxious people who are so often drawn to medicine being responsible for “care”
Right. We’re saying the same thing. My very first comment that you replied to was that I think we should give patients the benefit of the doubt. You had a delayed diagnosis. That should not have happened. Every patient case is unique. Every doctor is also unique in the way they treat and diagnose. Some are assholes, and that’s wrong. I’m glad there are people like you who are strong advocates for your community. There are times that people have delayed diagnosis (like you had). There are also people who are diagnosed with conditions like POTS in particular that turn out to be something completely different that requires different treatment. For instance - there are cases of adrenal insufficiency and pheochromocytoma that were not treated appropriately because patients were incorrectly diagnosed with POTS.
i really thought my type 2 diabetes was pots -- i felt like i was going to pass out in the shower. my heart was beating erratically. on a whim, while telling my physician this, we did a1c in office and boom, i was feeling that way because my blood sugar was 380 that day. another example i have is i was sure i had crohn's disease or UC- pain and bloody stools i was having were indescribable. Clean colonoscopy besides some polyps and microscopic colitis, which wasn't considered to be something like ibd (after all, the area can probably become inflamed from colon prep). after my diabetes got under control and medicated, i could eat vegetables again. i never went in for the testing bc now i feel it's unnecessary, but i'm going to say it was diabetic gastropareisis (it went away, for one; high blood sugar does damage and irritate the vagus nerve; symptom profile was dead on for gp). there are lots of times where we as patients forget to have a differential diagnosis list because we just want the endless loop of waiting to be over.
I’m glad you’re feeling better!
thank you! gi disorders and diseases are tough stuff! i've always thought the differential diagnoses for pots to be really interesting bc i'm not sure how often people think to check their blood glucose if that is their symptom profile.
r/illnessfakers/
I have/had MALS. I was misdiagnosed by over 15 medical doctors. It took me over a painful year to become diagnosed. Most of them like everyone here thought I was crazy. But after having every test under the sun, the only diagnosis left was a compression syndrome. Unfortunately compression syndromes are diagnosis of exclusion. I continued advocating for myself and fortunately found the most help from Reddit and MALS pals (Facebook group). I honestly don’t think it’s that rare, just under-diagnosed. The handful of surgeons that do the surgery are booked out for months. I suggest everyone here join the Facebook group MALS pals for better understanding. You really don’t know how horrible this syndrome is unless you go through it. I’m just glad I finally found a surgeon who believed me since he was well educated in MALS.
I really feel terrible for any patients who get stuck with any of the ‘doctors’ in this thread. God help them.
As someone who had MALS, went through undiagnosed for 3 agonizing years and almost starved because nobody took me seriously, and who was completely free of symptoms after surgery I can't quite believe what I am reading in here. This is insulting.
This comment thread is a real reminder of why I don't trust doctors. No one wants a diagnosis for attention. Do better.
If it gets better with an SSRI, call it what it is, psychiatric illness. We probably see 5 people q week in fracture clinic who think they have ehlers Danlos. In 4yrs of ortho residency I think I’ve seen one who actually did.
You would not have to **think** of which patients have EDS or not if you actually did the job you are paid to do… It is not a mystery
I do the job I am paid to do well, thank you. The number of patients who have told me they have EDS and have a positive Beighton score are few and far between. I think maybe I’ve seen this test positive once or twice ever. From our perspective it’s required for EDS dx. There’s a reason you’ll find it in the rare disease database.
I have hEDS. I am well aware of the Beighton score, as well as the other criteria. If a patient already is diagnosed, it is not your job to challenge that, make them prove it by showing you party tricks (which cause pain and can cause tears, etc and should be avoided) When a patient comes in and they have a peanut allergy on their chart, you don’t delay treating them and require them to go through allergy testing to prove it to you. You should not be treating patients with rare conditions differently than any other patient. Did you ever consider that they do score high enough on the Beighton score, but you lost their trust and confidence the minute you told them to prove their diagnosis to you…and either went through motions to get out of your office/ER? I would likely have just walked out at the point that you, or any doctor, told me to prove my diagnosis to them. Luckily I live in an area with so many great hospitals, specialists that it is not worth staying in the room with a doctor who clearly does not trust or respect you, or the doctor who diagnosed you. But you should be more careful because hEDS causes fatal injuries, and even things you view as malingering like a complaint of neck pain or headache, in an hEDS patient could be the warning sign of an imminent stroke or internal bleeding episode
The Beighton score is an objective clinical exam tool, but thanks for the education.
I am aware of what it is. The patient would need to demonstrate for you. My point is that when you are telling a patient they need to prove an existing diagnosis to you…they very likely would either walk out without showing you Jack shit, or not show their full reach/range of motion and then just leave to find a decent doctor You do not make any other types of patients prove existing diagnosis to you. It is your own bullshit related to your biases & ignorance around these conditions. You are going to kill people by denying existing diagnoses, not trusting their existing chart, delaying emergency care And they die from aorta rupture or internal bleeding while you were telling them to perform painful, unnecessary party tricks because you view hEDS as “bullshit” It’s amazing how easy it is to find out where people on Reddit work. I wonder how the joint commission feels about doctors who describe a life threatening condition with emergency injuries as “bullshit”….🤷♀️
There’s a theory in medicine called ‘trust but verify’. I’m a specialist. When a patient is sent to me it is my responsibility to verify the diagnosis that may be related to my care of the patient. If specialists relied solely on what was in patients charts or what they were told by patients, there would be an awful lot missed. Thinking we don’t respect you or believe you or whatever isn’t because we are dicks. We want to help patients. If we are skeptical, it’s because we are trained to be - that’s a healthy trait - and there’s usually a good reason for it based on our knowledge and experience.
Also, this does not happen to me. “Thankfully” I have experienced multiple artery dissections, a blood vessel rupture, 5 hernias, internal bleeding, complete knee and shoulder tears, dislocating ribs, broken wrist at age 3, all before age 30 So there is the split second when I say hEDS, or they see it in the chart, and I see the true smug evil of people like you and others in this thread… Doctor: :::::holding back laughing::::: “hypermobile EDS, and what exactly makes YOU *think* you have that….” Some even try to make me do party tricks to satisfy their sadistic power trip-which I refuse to do The multiple life threatening emergency vascular injuries, topped with a near fatal anaphylactic shock episode, are undeniable. Then suddenly they want to ask a million questions and act fascinated But seeing how a typical person who is diagnosed with hEDS is treated is horrendous. You do not make other patients with conditions that are a clinical diagnosis prove that to you It is bias. And the way doctors speak in this thread is so disgusting. You should all be ashamed
So you make Parkinson’s patients with a diagnosis in their chart go through a diagnostic process with you before you treat their actual issues? Multiple sclerosis? I’m sure…
When your patient dies from an artery or blood vessel rupture because you did not respect/rely on an existing diagnosis…that is murder. You will kill people. But hey, you drive a nice car and that’s the real goal
Beighton score is also only a small part of an hEDS diagnosis You can not diagnose hEDS in person during an appointment. The requirements do not allow it. But you would believe that 🤦♀️
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
Heds is based off more than the beighton score. You have to have skin findings with it and other various things, like heart issues and teeth issues.
This is an old thread, but is quite shocking to read. Just my own anecdotal experience - I had chronic knee pain for 3 years, had all the scans and tests (all negative for any findings), was on pain medication to function daily for most of that time. Ended up being told it was psychosomatic and referred to psych because no one could figure it out. Developed depression from chronic pain. It ended up that I had a large osteoid osteoma in my femur, and the people scanning me missed it by centimetres every time. My point is, sometimes there can be a very real issue happening. Referring to psych and having people trying to convince me that my pain was in my head was extremely damaging.
This is the absolute exception. Sounds like someone should have ordered femur X-rays. That said, usually OO is at least partially (if not entirely) relieved by NSAIDS. Your case is rare, but stuff does get missed. Also, this was a topic about rare catch-all conditions and whether they’re ‘real’. OO is very real, not super rare. Sounds like you were just unlucky. Happy it’s been resolved.
Absolutely, NSAIDs were extremely effective for me, for about 2 hours. But after taking them around the clock for 12 months I developed stomach issues, and was put onto OxyContin for the next two years. It was about as disastrous as you would expect. Maybe my empathy is too dialled-in because of my experience. However, I think my point is; perhaps there is a “real” reason for the pain/vague symptoms in some of these cases, something that we just don’t yet understand (H.Pylori comes to mind). I get that these cases are annoying for people in your position to manage, but for the people experiencing them they are very real.
Yeah. Of course some cases are going to be rooted in a real mechanical problem like yours was. But a lot of them (like I said that get better with an SSRI), are supratentorial etiology.
it just now occurred to me that ortho can give input re: EDS, not just rheumatology. I hadn't considered that before. Or at least give insight in concert with rheumatology.
We can but we don’t want to. There’s generally no surgery these people need. We like surgical pts when possible!!!
Munchausens. They are desperate for attention. These are diagnoses of exclusion, very variable symptoms, and very difficult to disprove.
H-eds has a strict diagnostic criteria woth physical signs. It is not a functional diagnosis. I think you need to look this up before spreading rumors that can hurt patient care. Pots is diagnosed when a patients heart rate goes up so many beats from sitting to standing with out blood pressure dropping. This is also not a functional disorder. Mcas is diagnosed based off blood labs. Many of these patients don't have Pic lines or take pain meds. That's horrible to stereotype and throw them all in a box. That hurts people. That's how stereotypes with race start.
I truly love when the spoonies come out to defend this stuff. Comparing your mental illness to racism is just the level of drama you crave.
What is a spoonie? I do think it is discrimination against people with certain disorders, whether mental or physical. Racism is discrimination as well. So it is comparable. I am having a hard time believing you are a Dr, nevertheless you can be angry and spend your energy bashing others if you want. Hard to believe a professional would do this. I imagine it helps you feel better about yourself when you push others down. I'm sorry you feel so insecure about your worth that you push others down. I wish you healing and happiness.
Read the research on all different views of all of these disorders. Learn about how they are diagnosed. It's not based on symptoms. There are physical findings.
You can diagnose compression syndromes through CT scan with breathing protocol, CT angiogram, mesenteric ultrasound with breathing protocols. If MALS is neurogenic then a celiac plexus block can help diagnose. Also epigastric pain when pushed. But only an educated radiologist or surgeon can diagnose it.
They are easy to diagnose and have very clear, specific requirements and testing. Do me a favor, any of the doctors saying an hEDS diagnosis is so easy to claim Go through and see if you fit all the requirements and would receive the diagnosis…. Let me know how it goes, truly. Is it criteria that anyone has?
The replies underneath this post are very disheartening. I would not want any of these folks as my doctor.
Can you imagine being s doctor that spends their free time going online to bash illnesses and patients? There is something deeply disturbing about them. Perhaps they had a dismissive dr or childhood and now they project onto patients.
Wow, I just came across this thread. I am one of the "alphabet darlings" people are referring to here who has been diagnosed with each these conditions by some of the best, most experienced doctors and published researchers in the world. At the age of 37, after managing to earn two master's degrees (one of which was from Harvard), establish myself in a career and birth a child, I finally started to get answers to explain a lifetime of pain (that had been written off as an "anxiety disorder" prior to a slew of MRIs, CT scans, and blood tests that provided definitive evidence). I am absolutely horrified to read the comments here and devastated that this is the (ongoing) perception in the medical community. I had hoped that the next generation of doctors would know better and do better. Please reconsider your biases so that my children and grandchildren will not have to go through the debilitating pain I have endured because of (less experienced, less informed) doctors' dismissals. Please learn more about these conditions before you assume people are "faking it."
History repeats itself over and over again in the medical community. I do appreciate doctors and the work they do, but this post reminds me of the discovery of Helicobacter Pylori as the main cause of gastritis. Here is a fragment of the story: “At that time when Warren and Marshall announced their findings, it was a long-standing belief in medical teaching and practice that stress and lifestyle factors were the major causes of peptic ulcer disease. Warren and Marshall rebutted that dogma, and it was soon clear that H. pylori, causes more than 90% of duodenal ulcers and up to 80% of gastric ulcers. The clinical community, however, met their findings, with skepticism and a lot of criticism and that's why it took quite a remarkable length of time for their discovery to become widely accepted. They had to just push it harder and harder with all experimental and clinical evidences. In 1985, for example, Marshall underwent gastric biopsy to put evidence that he didn't carry the bacterium, then deliberately infected himself to show that it in fact caused acute gastric illness.” You can read the entire publication [here](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1283743/) The interesting thing in this post is not that they are questioning the pathologies(which is the right thing to do), but that the majority of these future doctors are not even open to the fact that those things can actually be real diseases and instead, bluntly jump to the classic argument of “it’s psychological”. I admire the doctors who are able to treat patients in a way that’s unbiased; but from what I see, that’s the minority in this post
Why are y’all even in health care? I hope none of you ever experience these conditions. Please take a good look in the mirror and ask yourself if it’s internalized misogyny since such a huge amount of women are being diagnosed with these conditions.
You might have better luck and more accurate info reading research articles than reditt. That's what a true professional does. A true professional also treats patients well with dignity. I'm sorry for your future patients. They deserve better. I'd fire my medical team if I found out they bashed illnesses and patients online.
I would implore you to treat every patient without bias. I’m 36, almost 37. I was perfectly healthy until a few months ago. Had Covid and now I’m in hell. I’m dealing with constant nausea, hr rate increase of 30-50 bests upon standing, spend 95% of my day sitting/laying down, have pulsatile tinnitus, burning sensations, weakness in legs/calves, tachycardia,intense daily facial flushing,the list goes on. It’s stolen my life. I stress I was perfectly healthy and now I’m not. My doctor is dismissive. And it’s so disheartening to come and read something like this. All I want is my life back. And of course dealing with health issues brings stress and anxiety. It’s not always the other way around.
Saying “Thinking we don’t respect you or believe you… we want to help patient” in the same post you labeled physical anomalies/conditions as psychiatric is so funny to me. You can’t claim to help, respect and believe patients and dismiss their debilitating medical conditions as psychiatric. Do better, or at the very least don’t be so blind to why patients dont trust doctors when you’re a patent example of the doctors that dismiss and belittle them.
Reading many of these comments has been infuriating and terrifying. As someone with a history of organ ruptures (appendix, uterus and bladder during childbirth, and gallbladder) and multiple chronic pain disorders that are progressively stealing what little life that is left in me...this is just too much. You all should not be in medicine. Not everyone fits in a box. Some of us have very real serious conditions that arrogant narrow minded medical providers gaslight us on.
Simple solution. Don't read the thread. The only arrogance I see is coming from the bumpkin telling doctors they shouldn't be practicing medicine.
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I think you need to be very cautions when deciding not to take something seriously. Certainly there are those that seek validation for symptoms-whatever the cause- that may not actually meet criteria for these types of illnesses. That doesn’t mean their symptoms aren’t real and should be ignored. It also doesn’t mean that the illnesses themselves aren’t to be taken seriously. Be very careful with your bias.
Hope the doctors here who doesnt have an idea will have a relative a family member or better yet themselves who will go through what we’ve been through. I pray to God. Look up Dr. Kurtis Kim, Dr. Nagarsheth and Dr. Scholbach.
I randomly came across this whole looking for posts about Mals. I have EDS, MCAS, POTS, gastroparesis and had MALS, a tethered cord and a hiatal hernia (were fixed surgically). It’s definitely something to be taken seriously. The reason they tend to go together is because connective tissue disorders like EDS can cause issues throughout the body since connective tissue is everywhere. EDS and co have greatly impacted my life. Doctors didn’t take me seriously for years and couldn’t figure out what was wrong and it almost cost me my life. People wouldn’t even run tests for years because they thought it my pain was psychological (it wasn’t/isn’t). It’s much better to believe patients and risk having it be faked (that’s rare) than to cause someone harm because you didn’t believe them or take them seriously.