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?
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/.
@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?
@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.
.
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.
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.
Connect
Connect
Like
Helpful
Hug
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.
.
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.