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Functional Neurological Disorder Diagnosis

Posted by DawnG @imagine1, May 19 1:30pm

After MRIs, a lumbar puncture, and lots of bloodwork, my neurologist diagnosed me with Functional Neurological Disorder. My tests came back as normal, except for unexplained lesions on my brain and elevated c-level proteins.

My neuropathy has become progressively worse in the last two years. I now have braces on both legs and a walker. The neurologist has referred me to physical therapy and psychology.

I feel as though this may be a diagnosis made because he doesn't know what's causing the neuropathy and thinks it's, at least in part, psychological. Has anyone else received this diagnosis? Or do you know about FND?

Interested in more discussions like this? Go to the Neuropathy Support Group.

stallen | @stallen | Sep 23 7:55pm
In reply to @foundryrat743 "Your answer of “Doctor’s went to school, but have no clue…”, is perfect! Thanks for sharing..." + (show)
@foundryrat743

Your answer of “Doctor’s went to school, but have no clue…”, is perfect! Thanks for sharing that thought! I have had neuropathy in all limbs, for years, dealing with numbness, pain etc. and no matter whether I talk, or go through testing, with a family doctor, internist, or neurologist, none of them have come up with an answer as to why, and none have come up with any good solutions that help, in any way, to ease the discomfort! I’m at the point now, after 40 some years, living with gradual ascending neuropathy, that the doctor’s don’t have an answer to my neuropathy problem, so I don’t even bring the problem up, at my ‘annual medicare wellness check-up “! Whatever, seems to be the answer I give, if questioned!

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It sounds like you’ve been battling for a long while. I’m curious if you have any autonomic neuropathy given the length of time you been dealing with neuropathy?
I too have neuropathy with some autonomic involvement.
Steve

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pkh3381 | @pkh3381 | Sep 24 7:59am

Yes, I was Dx'd with FND. My Dr said that in the past, it was considered completely psychological, but neurologists have changed their thinking in recent years and feel that it is a problem with the brain communicating with the central nervous system. But, the idea that he might possibly think that I psychologically was causing my problem to get attention w as just too daunting for me. If he knew me, he would know that attention is not what I want. Quite the opposite. In fact, I don't talk to anyone about it and I keep to myself as much as possible because of the disorder. My symptom is my body moves from side to side, affecting my balance and walking. It feels like I am standing in a boat on the water, and it drives me crazy. He wanted me to do physical therapy with a specialist trianed specifically for FND, but I couldn't do it. Not with the possibility that she may think also that I am somehow causing this myself. I have thought about going back to him again because I am having probems falling again, but so far I haven't been able to get myself to go. How are you affected by FND and how was it explained to you? Was physical therapy with a specialist recommended? I would love to converse on this subject because I haven't found anyone else with FND.
P

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1 reply
celia16 | @celia16 | Sep 24 8:27am
In reply to @pkh3381 "Yes, I was Dx'd with FND. My Dr said that in the past, it was considered..." + (show)
@pkh3381

Yes, I was Dx'd with FND. My Dr said that in the past, it was considered completely psychological, but neurologists have changed their thinking in recent years and feel that it is a problem with the brain communicating with the central nervous system. But, the idea that he might possibly think that I psychologically was causing my problem to get attention w as just too daunting for me. If he knew me, he would know that attention is not what I want. Quite the opposite. In fact, I don't talk to anyone about it and I keep to myself as much as possible because of the disorder. My symptom is my body moves from side to side, affecting my balance and walking. It feels like I am standing in a boat on the water, and it drives me crazy. He wanted me to do physical therapy with a specialist trianed specifically for FND, but I couldn't do it. Not with the possibility that she may think also that I am somehow causing this myself. I have thought about going back to him again because I am having probems falling again, but so far I haven't been able to get myself to go. How are you affected by FND and how was it explained to you? Was physical therapy with a specialist recommended? I would love to converse on this subject because I haven't found anyone else with FND.
P

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I’m no expert on this condition, however perhaps the doctor misspoke about FND. I hope that he would not imply that you were responsible for this condition. I’ve done a lot of research about it and the literature is clear that it’s an actual condition and not a purposeful or contrived symptom. I might question the doctor to ensure he is clear about that.

I have actually suggested FND to my doctors, since I have a family history of it, and asked them to evaluate me for it, but they said it wasn’t that. It’s not a negative thing, imo, as long as the doctors are well informed.

My father has this disorder and it has improved over the years. When he was diagnosed, it was called Conversion Disorder. It was discovered by his neurologist and psychiatrist after he suffered repeated seizures.

I hope you can find a support system to help.

I think this link is ok.
https://www.ninds.nih.gov/health-information/disorders/functional-neurologic-disorder#toc-what-is-functional-neurologic-disorder-

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