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amber3212 (@amber3212)

Functional Neurological Disorder

Brain & Nervous System | Last Active: Jul 17 11:44am | Replies (49)

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@jubilee

Hi @amber3212 and @uldiver. I was diagnosed with functional movement disorder (FMD) which is a subset of FND after living with symptoms for many years. This is a tough diagnosis to wrap ones head around. FND and FMD are no longer considered to be "all in your head" (unless you consider that the brain is in your head!). Rather FND is due to a problem with the functioning of the nervous system, and based on recent research it is now thought by many neurologists to be the result of the brain’s inability to send and receive signals properly, rather than disease. Trauma is sometimes a trigger, but not always. Stress does seem to make symptoms worse…so that's the psychogenic part. But as my neurologist explained "the brain has hardware and software…your brain's hardware is fine but the software is not." I was thrilled when he told me there is treatment to 'retrain the brain'.

I'm not sure where you live but Stanford (California), Cleveland Clinic (Ohio), University of Louisville/Frazier Rehabilitation Hospital (KY), Mayo Clinic (Minnesota, Florida and Arizona), and The Recovery Project (Michigan) all have specialty clinics with special FMD programs. Other places like Mass Medical in Boston treat FMD and FND as well, and there are FND research studies being done there.

After I was diagnosed I found my way to 2 very good websites and a Facebook support group – all of which greatly helped me understand and eventually accept that the diagnosis is real for me. I highly recommend looking at the information at these website links if f you haven't already found you way to there: https://fndhope.org/ and https://www.neurosymptoms.org/.

I hope this helps.

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Replies to "Hi @amber3212 and @uldiver. I was diagnosed with functional movement disorder (FMD) which is a subset..."

@jubilee
That’s great to hear you’re doing better!
Neuroplasticity is important in every disorder/disease. It gave me hope I could improve, but unfortunately for me until they find a cure, I do as much as I can conservatively and with whatever medicine they recommend as we are kind of experimenting.
Good luck to those of you with FND and FMD.
FB support group are very helpful! I wish there were in person ME/CFS groups, but we are too sick and weak to meet in person. We have a support phone group once a week and discuss 3 topics of choice and then the research update at the end of the phone call. Definitely recommend support groups!