Functional Neurological Disorder (FND)

I live in Texas and my neurologist at UT referred me to a Motion specialist at UT. I did not know there was this specialist. He was very good, sent me for a DaTscan to rule out Parkinson *thankfully it wasn't) then he tried different medications (Propanadol which I couldn't take because I broke out in hives and Primidone which helps some) He also recommended botox injections which I tried but sadly they didn't help. My Functional Neurological Disease affects my left arm, hand with tremors and twitching of my left eye and mouth. He also sent me for occupational and physical therapy which helped. If you can find Motion specialist I would see if they could help. Best wishes

Suggest s t type in. Functional neurological disorder specialist near me on google then put where you are

I have posted before about my FND/FMD Dx and how it doesn't set right with me because of the pshychosomatic insinuations. Well, today's experience was no help. I went to a new neurologist to be the one who follows my other neurological problems. I told him that the FND was being followed by a movement specialist, and he said, "you need to see a psychiatrist for that condition"! Tbis is what I mean, and it has me going all over again. I know that my involuntary body movement is not a psychiatric condition, and responses like this make me just feel like giving up on getting help. It makes me very embarrassed and humiliated to tell someone I have FMD/FND.
P

Can you ask the Movement Specialist to write to the neurologist and explain what the treatment he is giving you? Perhaps that will subtly let the neuro know that there's more out there than psychiatry for FND.

I have had that diagnosis made too. My personal opinion is it is used all to often when a neurologist gets frustrated because all blood tests, nerve conduction studies, etc. are normal.
When they can't figure it out then you are labeled with FND or FMD. FND describes a problem with the brain receiving and signaling parts of the body. FMD is functional unknow movement disorder. In other words your diagnosis means little because they are totally unsure what is causing your symptoms. My experience with doctors who practice neurology is that there is a tremendous amount of unknown but the patient needs a diagnosis for insurance purposes.

I'm not sure it would be worth my time and effort. He even corrected me when I said "FND", to "FMD", but I wasn't going to argue with him. I could tell he had an ego problem, and I suspect he would have problems with a woman speaking up to him. Once I get the results of the tests he has ordered, I will transfer to the Dr I originally wanted to see in this group. This Dr has an excellent reputation, but I'm not crazy about his attitude. But, thanks! But, it just sets me back in accepting the Dx of FND. I know the onset of my involuntary body movement was not caused by stress or a need for attention, and this is what so many people think, including many Drs.
P

Have you tried to contact the Cleveland clinic? They have been very helpful in my diagnosis and treatment plan.
Best of luck to him!

Is there anyone who has been diagnosed with FND, but also has significant White Matter Disease, Cerebral Small Vessel Disease, and/or MCI? I have found several articles that state that these diagnoses can have an impact on balance and walking. I am still researching this, but I would really appreciate hearing from someone with more knowledge in this area. Also, one of my MRA reports indicated my White Matter Disease is in the 75th percentile and I am wondering if that it considered high? I also have been diagnosed with "Tilted Vision" and keep trying to get Drs to listen to me, that certainly this must affect my balance and walking? Any help would be appreciated.
P

Thank you for your feedback. No I have not and will follow-up. I just found an FND Treatment portal that listed 10 institutions that are actively researching FND, very helpful. Although my son has gotten to the point where he is not ambulatory and can only speak in a whisper, the Robert Woods Johnson Neurology Team he saw felt he needed both psychiatry/psychotherapy as well as physical therapy from a research medical team that fully understood the FND spectrum and specialized in it. Mayo is on that list and it was the first we sought help from because of the trust my son had for the clinic based on his previous experience. We tried but 3 departments turned us away. Based on the links, I am in the process of trying to connect with the Yale University PNEA group, Mass General, and Brigham and Woman's Hospital, all within reasonable driving distance. My daughter, who lives in California, is also following up with Stanford. Looking at the medical staffing at these 4 institutions I find that their skill base is much broader and specialized in addressing the various aspects of FND. Mayo's focus seems to be only confirmation of diagnosis but no follow-up. We are in desperate need of the follow-up.

I am an educated woman that has held several CEO and Board positions. I used to be a key speaker at conferences and on television. I know how to research and NEVER go to doctor appointments without reams of medical literature, all highlighted and tabbed. And yet, most doctors and I rarely get along. Many good specialists are VERY smart and simply don't have any people skills. Kinda like they failed Bedside Manner 101.
What I would say is: choose your fights wisely. You want to win the 'war', not every 'battle'. Does it REALLY make a difference if they want to call your dx FMD or FND? Just let it go - at least it's in the same general direction. Focus on the involuntary body movement and get them to tell you what to do to manage their perceived stress response or attention response. Stroke the ego. You may be surprised what they eventually talk themselves into - or out of. Same deal with the psych's. Go along and see what they talk themselves out of. And always get referral notes from them to show the next doctor. (For when the next one suggests the same thing!)
But let me tell you a story:
I was referred to a TOP specialist who ordered every test under the sun, which all came back perfectly normal. So he took a little Post-it note, wrote the name and number of a psychiatrist and told me to see him. I stood up and confirmed his thoughts by rolling said Post-it into a ball, threw it at him and stomped out.
About a year later I was asked by my new (wonderful) doctor to be the key note speaker at a regional Medical Association luncheon. Never one to say no to a free lunch, I accepted. When I stood up to speak I noticed my old doctor and said TOP specialist in the audience. My speech was about doctors that fail to listen closely to their patients, and when the illusive diagnosis gets outside their immediate sphere of knowledge, rather than using it as an opportunity to learn more by doing some homework, the patient just gets shuffled off, usually to a psychiatrist. I mentioned the number of doctors I had been through before finding one that was prepared to travel my journey with me. I tried really hard not to stare at these two doctors! But I did notice that, rather than stay for the rest of the program, both ran out without stopping to say goodbye to anyone!!!
Good luck. Do some homework so you can make notes of what is wrong with what they are saying. Phrase your arguments as questions using the homework you have brought with you. AND don't throw Post-It notes !!!!