Looking for a diagnosis or name for my weird body. For years in my muscles in neck, arms and now mouth, tongue etc will spasm out of control sometimes repetitively till quiet down. If I were to let someone rest their hands softly on my head ,I would have movement I could not control. I can tense up so there may be less movement but if relaxed there will be movement. Even if I try to control I often have no control over it at all. I have to be very careful not to hit my PT. over the years and many PTs use different terms for it. It is always worse after a new injury. Or sometimes after a new injury there is a stiffness or absence of movement initially then as I get better the movements return. I have had Drs be totally baffled and think I am withholding movement when stiff or that when I have a bizarre spasm when they manipulate me think I am doing it on purpose. I AM NOT. I sometimes can be injured by the forse of the spasm.. My PTs have always understood and been supportive and thought Drs ignorant when they do not understand. Other PTs they might bring in to teach- some were scared( looks like something from the exorcist).
Only the best of PTs can treat me and manage both my problems and handle the spasming so neither of us gets hurt and that the releasing can be therapeutic. I have been used by many therapists to teach tech niches such as cranial sacral or unwinding. All say that This stems from my CNS etc. I do not understand why no Dr or where to find a Dr to understand. I do not even know the words to communicate with them. several wonderful PTs have said they have tried but the Docs do not get it. 4 orthopedists missed my torn rotator cuff though the PT knew at once. They would grab the arm and it would swing in some weird spasm.
This all started after the first of 5 MVAs and I was diagnosed with "THE MOST SEVERE CASE OF ATYPICAL FM THEY'D EVER SEEN" It was actually late stage Lyme Disease and Bartonellla. I WOULD LIKE A REAL name for these spasms I have so I can be properly diagnosed and possibly helped. I have never had a neurologist even touch my body enough to figure it out. I am so tired of being weird. IF ANYONE KNOWS OF A DR NEAR RALEIGH NC WHO IS SMART AND HANDS ON ENOUGH TO FIGURE THIS OUT I'D APPRECIATE A NAME. I have other issues getting worse and need to deal with this and other issues.Thanks.

My suggestion would be look for a Movement Neurologist, one that specializes in that... they know more about muscles and how and why certain movements occur. Best wishes and sorry for your frustrations.

Have you been to a neurologist?

Go to wemove.org and look up cervical dystonia. Does that sound like what you have?