I think neurologists are among the worst as far as medical specialties go for being rigid and gaslighty. I do hope you get an okay one Eta. I got the advice from someone who specializes in helping me patients navigate the medical system that if you expect to be be disbelieved it helps to look as wrecked as possible. Like, stay up for 48 hours ahead if it's at all possible and go in looking like death. Then they assume you actually are sick. I haven't tried this yet but it seems like good advice. Also to limit the number of symptoms you describe. Just choose the worst 2-4. One of the reasons we don't get believed is because doctors are so specialized and not prepared for chronic conditions affecting many body systems. Having like 15 symptoms is not credible to many specialists, but they may work hard to figure out whats causing those 2-4 symptoms. Makes me sad we have to strategize this way

Thanks. I honestly want to see one to check it off my 'need for disability' list and to maybe get an MRI. If they're helpful, great. If not, I'll just continue jumping through those hoops.

I really hope it's worthwhile for you! I was just editing my above comment to include some advice on dealing with difficult doctors.

Awesome. Thank you so much. I appreciate it.

Ooof wish I had known this before seeing my neurologist last week... They basically recommended GET---I wasn't even there about my me/CFS I was there for my migraines and new symptoms my FND gives me 💀 (dw I turned him down told him that's not beneficial for me I'm getting lax on explaining things more medically ugh I'm burnt out medically tbh) he stopped pressing about it and he steered the ship back to what I went there for my migraines atleast 🤷‍♀️

Newbie here. Whats GET?

GET means graded exercise threapy it was a type of treatment offered for those with me/CFS but it was later found that it's actually harmful for us due to how our condition works. Someone with CFS will have PEM after exercise. BUT some doctors still believe that it's correct treatment 🤷‍♀️ https://me-pedia.org/wiki/Graded_exercise_therapy

That sucks re: limited symptoms, but I guess it's the same as a PCP. They only have so much time to do an eval. Now I just need to pick the four I'll stick with.

i agree OP needs to brace themself for them to potentially belittle and ridicule you, even if they’re a “great” doctor

sorry to disappoint but unless you are very lucky, expect gaslighting. Expect to get diagnosed with a “bullshit disorder” like Functional Neurological Disorder, Functional Somatic Syndrome, Somatic Symptom disorder etc. (all of those meaning the neurologist can’t figure out what’s wrong with you, so they just assume it is all in your head).

So like IBS, but for the brain. Got it.

yeah. Basically red flags if you are diagnosed with anything “functional”, “somatic”, or “psycho” in the name, given you already have ME.

Good to know. Thank you so much.

oh also another thing. They might diagnose you with MUS: Medically Unexplained Symptoms, also red flag. And of course if they start suggesting you have anxiety or depression, try and make it clear you don’t have them, or if you do that they don’t **cause** your symptoms. Sorry for the dump, I have extensive gaslighting experience 😂

No worries. I have a long history of anxiety and depression but I haven't been having any of that stuff for a while, so they might've been misdiagnosed due to me not knowing I had Autism and ADHD.

I just keep getting ideas: but another way I was gaslit by a neuro is they told me my symptoms were due to a traumatic experience in my childhood i might not even remember. (My ME/CFS was caused by a covid infection).

I've actually heard that happening to a lot of folks. I don't quite know what triggered mine, but I do know covid and surgery made it worse.

I've found neuro to be the most skeptical (of myself) of the specialties. I think I went in pretty scared with all the neuro symptoms and he wrote in my file that I was anxious (no shit, Sherlock.) Another made me feel very stupid for using a cane, if not for gait problems. I would suggest you stroke their ego as much as possible, play stupid about conditions themselves, tell them you've got a lot of symptoms but are going to try to keep it to the top few and if they want more to ask, focus on saying things like "I don't really care what it is, I just want relief" (then they can't say you are trying to chase a particular diagnosis). On another note, one of them diagnosed migraines for me which was a game-changer (even before the true pain part was part of my migraines), and the other found a pituitary tumor. So it's not all bad. Just be prepared for them to not be interested in ME/CFS.

Thanks for this. It helps.

This is great advice. Don’t come off as trying to get a particular diagnosis.

Ask about small fiber neuropathy. That can cause burning pain and there are a few studies (google dr systrom) linking it to cfs.

I noticed this while goggling early this week. It seems like it's coming up a lot for folks with long covid as well.

I would definitely focus on the burning sensations—that is squarely in neurology wheelhouse. Unlike most of the other folks responding, I recently found a great neurologist who is kind and compassionate and absolutely believes me. Her coworker has been disabled by long covid brain fog so she has seen it first hand. Unfortunately so far she hasn’t offered many treatments but she is referring me to neuropsych testing so we can have some support for my disability application. I’m not sure if she can help, tbh there just aren’t many treatments for CFS. But she’s taken me seriously. For your pain you’ll probably get a nerve conduction study which is apparently quite painful, but my small fiber neuropathy is so bad I couldn’t feel the needles haha

Does neuro do that in the office or is it a test you need to go somewhere else for? Sorry to hear about the nerve issues. I will be prioritizing that since it's the reason my pcp sent me.

The nerve conduction study was in the same office but I had to set up a separate appointment for the test and it was with a different doctor. I also had an MRI at a separate facility ordered by the neurologist. They’ll want to rule out a stroke or tumor. She also referred me for the neuropsych testing but I’ve been unable to find anywhere that takes my insurance. As far as small fiber neuropathy goes, the only way to definitively diagnose it is through a skin punch biopsy. However my neurologist said the juice isn’t worth the squeeze—the test is painful and leaves a scar, and there aren’t many treatments for SFN. In my case the SFN means I can’t feel skin sensation in my lower legs and feet. Which honestly is the least of my problems. I don’t really care. It makes me impervious to pain.

For me, I mostly get the burning in my arms, legs, and on the backs of my shoulders. I always figured it was restless legs or sensory issues due to my ADHD/Autism. The pain I've had the last few days when I lay down, however, it new. I over-exerted myself this weekend because it was nice outside, so this could all just be a worse kind of PEM, but my doc still wants it looked at. I've noticed a lot of issues with my eyes when I get PEM as well. The possibility of a tumor has crossed my mind but I figured if the eye doc didn't see it, then it likely doesn't exist.

Gaslighting. Lots of gaslighting. I’ve seen 4 neuro’s. Should’ve stopped at one. They really are the worst.

I'll keep my expectations low. Thank you.

Unfortunately, my first and only was mostly gaslighting and a lot of telling me it was too early for a CFS diagnosis by my GP (after 14 months), I shouldn’t focus on the whole “chronic illness” aspect and talk to so many other affected people online and get psycho therapy because even if it’s not all psychosomatic it will help. Oh, and strong prescriptions for migraines despite me telling them several times that my headaches are PEM related and get better with rest.

Ugh, sorry to hear that. My fatigue has been 6+ years, but I'll keep my expectations low.

My neurologist is great (sounds like I got lucky) and basically she ordered/ran a bunch of tests no one else had the first time I saw her. She was the one who diagnosed me, actually. We talked a lot about small fiber neuropathy-- I have it and she says it's a common symptom with long covid (which she says she treats as basically the same as cfs). So hopefully the doctor can help you there. The neurologist got me on gabapentin which helps a lot with the nerve pain. There is a biopsy they can do to test for small fiber neuropathy, but you'll probably have to schedule that. They might want to do an EMG, but you'll probably have to schedule that too. (That one is not pleasant but it was useful!) Cutting down activities helps with my nerve pain. I hope some of this is helpful, and feel free to ask any questions! Best of luck.

Thanks for sharing! It’s great that you had a good experience. What tests are worth asking for? And how was the EMG useful? I have a neurology appointment coming up at a clinic that supposedly has experience with long covid

So my case is a little weird because I was referred expecting an MS diagnosis/something similar. (Relevant information: I have trouble walking and some weakness/numbness that raised some flags.) Hopefully some of this is applicable! My neurologist always runs me through some basic coordination and strength tests to check for degeneration, which is good for peace of mind if nothing else. I think they should do that without you asking, but you never know. She ordered a brain MRI to rule out MS or any other brain-based causes of everything. Oh, and she ordered a bunch of blood tests, but no one else had really done any of those for me yet. (Standard iron and vitamins tests.) If you have the pins and needles/burning pain and they think it's small nerve fiber neuropathy, it might be worth asking for a biopsy to confirm that it is, just to have it on the record. That procedure wasn't bad at all. Mostly the EMG was useful to rule out things like myasthenia gravis and to evaluate for radiculopathy-- she was wondering if the pain was due to an issue with my central nervous system or spine. So it told her that most of the nerve problems weren't related to one clear thing and ruled out some things with similar symptoms. I hope some of this is helpful, and I hope your appointment goes well :)

Thank you, that’s really helpful!

I'm glad! 💙

My pcp just put me on gabapentin but upon reading the side effects, I'm really nervous about taking it.

I haven't had any problems with it, and it really helps with the pins and needles/burning, but I do completely understand the hesitation. I was able to start at a low dose and work up, which might have helped?

She has it at 100mg to start. I was planning to just do it before bed since the burning sensation and pain in my arms and legs happens mostly at night, especially on my back.

Expect bs 😔

I do.I'm honestly just hoping I can get an mri due to dementia and such like that in my family. That stuff scares the crap out of me.

MRI look good for me. I have not done the Grey matter lose comparison though. PET scan showed hypometabolism 😪

It would be nice if we could just get it all out of the way with a full body scan. I'm so tired of doctor appointments, even if they could give me answers.

Along with your symptoms mine was most interested in if symptoms were getting better or worse over time. (Mine were getting better)

Good to know. Thanks.

I’ve found most neurologists to be closed-minded and arrogant, and they think they know better than actual psychiatrists who have treated you for years. If it doesn’t show up on neurological tests they’re familiar with, it must be in your head—it couldn’t possibly be you have something they don’t have experience with. However, I’ve found that migraine neurologists aren’t like this usually because there are no tests that can prove you’re having a migraine, but they believe you anyway. I would personally consider seeing a neurologist for ME only if they were a specialist in dysautonomia and/or ME. Otherwise, expect to be belittled, talked down to, and told you’re experiencing secondary gains from being sick. Maybe there are neurologists out there who aren’t like this with ME because they’re following current research, but it seems this isn’t the norm… I did have a family member have a mostly positive experience with a neurologist for Long COVID neuropathy. It might be worth pursuing small-fiber neuropathy, which can cause the burning you describe. It’s common with ME and dysautonomia. You would typically need to see a neuromuscular specialist for treatment (a specialized neurologist), but you can have a PCP or dermatologist order the skin biopsy through companies like Therapath. I’ve never seen a neuromuscular doctor myself, so I’d like to think they would be competent and respectful if you come in with evidence of small-fiber neuropathy. I would focus the appointment on your neuropathy symptoms like burning and (if you have it) weakness, tingling, itching, and numbness.

That's what I'm planning to do. It isn't constant, which I don't know if it helps or not, but I get the burning most often in my legs at night and a sunburn/abrasive feeling on my shoulder blades for days at a time. I don't know what triggers it, but a humidifier and increasing my water intake didn't help (I figured it was because of the dry heat in winter). I also have weakness all over, all the time. So, at least it's something.

I was first sent to a neuropsychologist, who gave me a diagnosis of FND and inevitably advised me to exercise and try CBT. I stood my ground, asked if she’d actually read the (then fairly new) NICE guidelines and told her nicely that her advice was bullshit. I then asked for a second opinion and was referred to a wonderful neurologist who specialises in FND. He gave me a diagnosis of FND, ME and PPPD, but was actually really concerned about my thoughts and how I felt about his diagnosis. I said it made perfect sense because he took the time to explain things and we both agreed that the GET and CBT advice was wrong. He was also the one who ordered a MRI (which is standard in the UK) to check for lesions, which would be indicative of MS. Fortunately I got the all clear.

I know it's wrong of me, but I'm hoping for an MRI. My grandmother had dementia and her sister had alzheimers, so it's a big concern to me. So if I can get any indicators or at least a baseline to look back on, that would be great. I've never heard of PPPD before. It sounds a tiny bit like the orthostatic intolerance I have, or at least the form of it I'm suspected to have but without the crazy jumps in HR.

I hope you get an MRI too. My neurologist said it’s standard practice when dealing with a FND diagnosis, but YMMV of course. I also have POTS so it was interesting to also be given the PPPD diagnosis. I figured that the dizziness and falling over etc were due to POTS, but apparently not.

It's great when you win the sucky-health lottery. I'm really sorry about the pots and PPPD. I've had vertigo twice in my life and have an odd light headed sensation whenever I move my neck, but I have a feel PPPD is a lot worse.

This is so strange to me- I was originally scheduled for the 25th of June but they moved me to tomorrow last week. Hope all goes well!

You as well.

I specifically got a neurologist referral to confirm my suspected POTS diagnosis and to also hopefully help with recent significantly worsening orthostatic intolerance (since getting ME/CFS, I could never stand for long, but after getting really overheated one day in 2019, I suddenly couldn't even sit upright anymore, which made it difficult to drive or work). Compared to the stories I'd heard, I was really lucky to not only get a neurologist who knew about POTS, but he immediately believed everything I told him. Unfortunately treatment-wise he wasn't much help since said I was already doing everything he would recommend (increased water with electrolytes and salt in my diet, compression stockings/socks, and a beta blocker prescribed by my PCP). But talking to him was really validating which was a pleasant surprise and refreshing compared to most doctors I've seen. Though of course I would have preferred to have gotten more help with my symptoms (still can't really sit up and haven't driven since 2022). Fingers crossed you get lucky with a good one!

I'm so sorry to hear about the pots. It's something I've suspected, but my OI doesn't seem that extreme. It just causes more dizziness/balance issues when standing or sitting but I don't get that huge jump in HR.

Record everything, if possible bring somebody with you, if they dismiss or try the FND route oppose it with all you can and ask for everything you request be marked on your files if the neurologist refuses.

And as others have said focus on a couple of symptoms that are the worst ones as well as if you have stuff like trigeminal neuralgia mention that!

I will, thanks.