Dystonia Bulletin Board

I just joined the forum tonight on a bit of a whim. I'm not what you might consider newly diagnosed, but in some way I am. I was born with what I now know definitively is dystonia, but I only got the "official" diagnosis last year. I am now in my late 20s, and it took that long for me to find someone knowledgeable enough to know what it was. The etiology of my dystonia is unknown, but the diagnosing neurologist has suggested a fetal stroke based on my CT scans.

I live at odds with my left side, and have my entire life. It has never felt like a part of me, particularly my left arm, and I tend to get angered and frustrated with my left when it flares up. When I was little, it was mostly just the arm and torso, making it impossible for me to take ballet classes, play baseball (which I would have loved to do), swim for long periods, climb trees, hang from monkey bars, do chin ups, and even made me nervous sometimes to ride a bike. As I have gotten older, more of my neck and face goes with it when it writhes. I'm fortunate that it is not an "every moment" thing, but I have absolutely wretched days of non-stop contortions but also days without a single flare. I feel lucky that I appear pretty normal, but I suffer extreme embarrassment when an attack comes on in public and make every effort to mask it in whatever way I can. These days, my leg seems to be coming, too - although I'm not certain if it's to divert energy from my upper half or if the leg and foot is actually twisting also. (When I was little I used to "dance" to distract myself from the pain, and it always seemed to sort of help me regain control of my arm.)

I have some speech issues too, but very slight - most people think it is just a stutter, especially when nervous. I have a hard time recalling everyday words sometimes, but I have NO idea if this might be related.

In the last eight years, my vision has really started to suffer and I sometimes worry about it. The vision problems wax and wane, but with an overall severe decline in my left eye. The neurologist mentioned that it might be related.

I've only been able to see a neurologist once in recent years, and he is who diagnosed me. He was a specialist in movement disorders, and I was referred to him by an orthopedic surgeon who was treating an unrelated problem but noticed my dystonia right away. At the time, he offered to prescribe an anti-seizure drug, but since I have tried several over the years and loathe the side effects, I refused. I've since had to move to a new city, and do not even know how to go about finding a new neurologist here, or if I even should. At the time, the neurologist said that, unless my symptoms worsened, he didn't see a need for me to see him regularly. I don't consider myself that bad, but in May I had such a terrible twist of my left shoulder and neck that I could not move my head at all for two days (and thus did not get out of bed). Finally, after vicodin and a week of muscle relaxers, I was mobile again, but two months later my neck is still painfully tender and feels ready to spasm if I am not careful. For the first time in my life, I have truly become fearful of having another serious attack like that.

I've never known anyone else with my problem, and am not really sure who else to turn to at this point. Having just moved to a new place, I haven't even gone in to a GP yet - and I hate doctors so much that I'm pretty reluctant to go. I always feel like they never believe me.

Is it common to have dystonia affect only one side?

Does it continue to worsen with age?

And, if my symptoms seem to be getting worse, should I try to find a new doctor? Or, do I just need to be more careful to avoid triggers? When my neck went in May, I know it was because I had sat in front of the computer for too long working on a final paper for my undergraduate degree. I have been trying to lessen the amount of time that I sit like that, but that is hard because I began graduate school already in June, requiring a lot of time researching and writing.

Finally, does anyone here practice Tai Chi? I have heard that it is good for "redistributing and refocusing energy," and my diagnosing neurologist actually recommended it. He said that some of his dystonic patients report relief from it. Has it helped anyone here? Physical therapy was excruciating, but tai chi sounds possibly promising...

I know this is a lot of information, and my apologies if I should have broken it up into multiple posts or if I have rambled terribly. I'm very happy to have found this place.