Functional Neurological Disorder (FND)

Have dealt with thigh muscle fatigue and pain as well as legs buckling and falling for almost 5 years. Recently suggested it might be FMD/FND. Hoping it does not take another 5 years to treat?

@jubilee I was just diagnosed with FND from a Neurologist at MUSC in Charleston, SC. My issue is I keep having stroke like symptoms where my whole body stops working. I had a eschimic stroke a year ago. Usually starts with my legs then my whole body can't move, speech is slurred if I can even speak. I'm dizzy most days, have issues now with
Anyway, I wanted to thank you for the information. My issue now is finding care. Did you seek care at Mayo Jacksonville by chance?

@lbholley I was also recently diagnosed with FND by a neurologist at MUSC. Although I have a meningioma with mild mass effect on my cerebellum, my neurologist said my symptoms should not be from that. He said to get cognitive behavior therapy to deal with the symptoms.
I wish you the best in finding some solutions.
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I was diagnosed with Functional Movement Disorder in November of 2024. One of the problems is that neurologists like to use their own terms for the same disorder. Some refer to it as Functional Psychogenic Disorder, some Functional Movement Disorder and some Functional Neurological Disorder which makes it all unnecessarily confusing. I was told there is no cure for it and was referred to a Neuropsychiatrist, who declined the referral and instead set me up with a Psychiatrist with far less experience, but who fortunately prescribed Gabapentin 200mg three times a day. Perhaps it will not work for everyone, but for me it was a game changer. I had experienced uncontrolled leg, arm and body movements, stuttering and a strong startle response to unexpected sound, movement or light. I now take 300mg Gabapentin three times a day, and for the most part, the symptoms have diminished to the point where I can lead a fairly normal life. I understand that FMD/FND/FPD manifests itself in many different ways in different patients, so what worked for me may not work for everyone.

@wilmslow I took Gabepentin for several year for seizures and for pain. Neurologist prescribed because she believed it was all connected to my MS. Helped for awhile. No seizure activity for number of years. Don’t take Gab anymore. I would ask your doc if Propanolol might help? Best wishes.

For everyone, since this is a neuroplastic disorder, meaning that the brain is sending faulty signals. It's also might be useful to go to the association for the treatment of neuroplastic symptoms, symptomatic.me
Where you can find resources and practitioners who are trained to work with people with FND. It cannot hurt to use this approach and conjunction with any medications.

My son, who is in his mid thirties now, has been suffering from FND since his late teens when very little if anything was know about it. Early symptoms, including migraine headaches, GERD, panic attacks, irregular sleep disorder, among others, led us to seek help from a host of doctors of different disciplines. It led us to the MAYO Clinic for a week where they suspected the cause of a number of these symptoms was "Conversion" disorder, or "psychosomatic". We were told by the Pediatrician and the Psychiatrist who saw him that we should seek family counseling which my spouse declined to do. We subsequently, after a number of years seeing other doctors including a geneticist, looking for a "somatic" reason, saw two neurologists, one specializing in vascular and sleep disorders, the other movement disorders, as my son began to have difficulty walking and standing and was having sudden onset seizures. The Vascular Neurologist did brain MRI and CT scans and found no "organic" reason for the seizures. The Movement Disorder Neurologist, a Columbia University specialist, seemed to be the only one we saw knowledgeable in this area, diagnosing him as suffering from FND. We took our son to a 3rd neurologist, at Robert Woods Johnson, for confirmation. Our son was still speaking regularly at that time but in a whisper. He was now confined to a wheelchair and hearing voices. The neurologist confirmed FND and indicated that the seizures he was having were "Non-Epileptic". He advised that we confirm what he termed PNES, have our son see a Psychotherapist, a physical therapist specializing in FND rehab and a psychiatrist specializing in FND. We went to the FND Hope website for guidance. We found a group not far from where we live that seemed to have all the skills he would need to help him. They did confirm NES by doing a video 24 hr brain scan. His first two meetings with two different Psychotherapists in the group were fruitless as my son would not engage in any conversation with them. They indicated he likely would need to be medicated as they could not work with him the way he was and is. We took him to an FND neuropsychiatrist who indicated he needed to be medicated, but my son refused to take any of the medications she recommended. The only thing he does take on a very limited basis is Ativan to help with his seizures when he feels them coming on. It is today and things have not gotten any better. My son refuses to see any more doctors because he feels they can't help. He still believes his illness is somatic. We don't know what to do or where to go to get help for him. Has anyone out there had anything like this experience? We have been told that CBT is one of the most successful approaches to dealing with FND but if you can't get the patient to speak with a Psychotherapist what do you do?

Really challenging situation
I could, I would suggest looking at a website of ATNS, association for the treatment of neuroplastic symptoms, symptomatic.me.
FND is a neuroplastic condition. And resources and practitioners there.
I have various nervous system dysregulation myself. I do work with one MD (who works as a health coach depending on what state you're in as you can only practice medicine in certain states) snd on her website, she has a support group for family members of people who have disability or something like it. Sounds like you might want to contact her Rachel Hollander is her name.
Website is hollanderholistichealth.com
Just to look into might be if some help..