Paroxysmal Kinesthetic Dystonia

[FeatherMe]

This is so rare it is hard to find information about it from a patient's point of view. Do you know where such a site can be found? What can be done to help with this hit and miss monster? It is not incapacitating, just painful. There are times when I feel very electrified and the spasming seems to relieve that build up.

[MG (Admin)]

Please explain...is this a new diagnosis that has been give to you?

[FeatherMe]

I have been dealing with this for eleven years. I was told it was dystonia. I would hand papers out to my class and the very extending of my arm would cause me to go into spasm and the papers would drop. Driving would set me off. This all started about six months after a head injury where I fell head first into a door. Several months after that started I would go into dystonic posturing, actually a claw hand, when the chiropractor would touch the back of my shoulder. Then I had another head injury - this one ended with a concussion, not pleasant. My spasming became more intense and is now body wide, although my left arm seldom is involved. I also began myoclonic jerks about 8 mos after that accident - severe and numerous at falling asleep times.

When the spasming first began a neurologist said it was dystonia and sent me to a movement disorder specialist. He saw me trigger a spasm by extending my right arm. He called his partner in and asked me to repeat it. I did. By the way these are painful and exhausting. They can last from seconds to an hour.
The two of them began laughing and said they had never seen such a demonstration. Their recommendation - I see a psychiatrist.

I never went to the doctor they recommended nor to any other movement disorder specialist. Since I have somewhat control over it, I just try to avoid situations that trigger events. I haven't thought it to be that important - just freaks out some medical people if they happen to trigger events by what they do.

In my exam at Mass General, the doctor triggered a couple of them and apologized all over the place. She expressed concern and I told her my story. The docs at Mass General have set up an appt. for me in mid-Dec with one of their movement disorder docs. Because of their attitude and willingness to continue to investigate my other problems, I will go. It appears my tilt table results aren't what's expected and they were going to meet and get back to me last Friday but I didn't hear from them.

[clinicalguru3]

docs at Mass General have set up an appt. for me in mid-Dec with one of their movement disorder docs

Let us know how it goes.....it seems you have been given a number of rare diagnoses and my feeling is that there must be a link between them.

It is important to know how the MD specialist interprets your neuro exam.

all the best

[FeatherMe]

I have been told my problem is not neurological. I need biofeedback and a psychiatrist. I already have the psychiatrist who is ready to dismiss me. I'm sure I have logged more hours with a therapist than the doctor who judged me as not having a neurological problem based on my past medical records and the fact he has never seen a reaction like mine before. That's been the basic problem - I don't have anything typical so therefore I must be causing all this myself. He told me stress was the cause.

I don't know how I managed to have a skin biopsy show small fiber neuropathy by stress. Now isn't that neurological?

I have a young doctor who is enjoying the challenges my body presents. He has asked for records. I pray he is not influenced by them but sees what hasn't been done and what needs to be done.

I think my time with seeing doctors will be over once I get by my current challenges that are truly not neuroogical. If I can get to walk without pain and crutches, I will have accomplished much. I tried a knee walker but my legs were too weak and painful. After a small walk I went to step inside the house and my leg gave out under me and I went down - quite gently and gracefully! Due to a chest wall problem I have to stop using the crutches so I'm in the power chair. My nephew came tonight to measure for a ramp. A vehicle will be next.