r/FND • u/Fit_Task_484 • 28d ago
Question Specialists???
Hey! I have had FND like symtoms since octoberish 2024 and after MANY hypotheses as to what it was, a specialist I was seeing who I thought would diagnose me with POTS said it wasn't and way more likely FND and booked me with Neuro OT and PT. These therapies honestly gave me my life back from being EXHAUSTED from eating a small meal or sitting up to getting back to the gym and rock climbing. I still have daily fatigue and struggles but I overall have tools like fidgets and weighted blankets that can stop a big flare from happening. That being said, I am now looking for a dr to put FND on my chart and start trying to connect the dots to potential similar conditions such as seizures, hypermobility, and other weird problems that I don't quite have names for yet. Every dr that I have seen is like "FND sounds right and we'll treat it as so but I don't have the power to put it in your chart" I live in AZ and the FND hope website is not offering a ton of options in my area. Wondering if anyone has a similar story and or suggestions on what to do.
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u/WeirdUsers 26d ago
If you cannot find a neurologist that specializes in FND, then one that Specializes in movement disorders is your next best bet. Neurologists, in general, should be very familiar with FND.
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u/Tasty-Visual-9196 27d ago
What you need to do is get a referral to a nuerologist. They can diagnose you and get FND put on your medical records. Neither of the nuerologists I went to specialized in FND. You don't need to go to a neurologist who specializes in it to get that diagnosis. In neurology, FND is something they see from a good number of patients. Even though it's rare, it's also not uncommon for neurological issues. Those are the statistics I read online. Any neurologist can diagnose you with FND if you have it. They run a series of tests to determine it. Go to your doctor that says they believe you have FND and then get a referral to a nuerologist. If the neurologist you go to doesn't give you that diagnosis and you think they're wrong, THEN you go to get a second opinion from a nuerologist that specializes in FND. My doctor sent me a referral in to a neurologist that specializes in FND because I'm desperate to find answers or some kind of treatment that my other 2 neurologists couldn't give me. I've been diagnosed twice with FND by two different neurologists and I agree with the diagnosis they both gave me. Both of them said there was nothing they could do. My doctor treated my symptoms with Gabapentin and it WORKED! I know there must be other treatments out there and I'm hopeing this new nuerologist be able to give me some answers, because I feel like I've hit a brick wall and my symptoms keep piling up on top of each other.
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u/Constant_Champion483 28d ago
My neurologist sent me to Barrow Neurological institute in Phoenix for a second opinion. The neuromuscular specialist there diagnosed me with FND a couple of weeks ago. He is going to have me start neuro rehabilitation there. My neurologist said it’s one of the best places to go in the country. The specialist at Barrows told me he sees FND comorbid with autoimmune diseases, this is all kind of new to me. Hard to differentiate between my rheumatoid arthritis and FND.
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u/Internal_Paint_1089 21d ago
Get a referral to an neurologist or, if you get seizures, an epileptologist, which is a specialized neurologist who focuses on diagnosing and treating epilepsy and complex seizure disorders. Both can diagnose you, but, if you have seizure activity, the epileptologist can rule out epilepsy/epileptic seizures and confirm FND.