I had my appointment with a dystonia specialist at Johns Hopkins today. I do not have "classic dystonia", or apparently any dystonia at all. She did make one interesting observation--I have "brisk reflexes" below the neck, but my chin reflex is normal, which suggests the problem is not in the brain but in the spinal cord.
The really important question, though, was whether Botox injections would help, and the answer was disappointing. In dystonia, only a few muscles are generally affected, so if you paralyze or weaken those the problem goes away. So many of my muscles are affected, though, that if you paralyzed some of them that would just let the others do more damage, and I could be worse off than if I did nothing. And if you paralyze all of them then you have this serious side effect called "not moving".
She did suggest some tests for stiff person's syndrome, and a drug regimen if that's the problem, that I need to follow up on with my regular neurologist. (Stiff person's is an autoimmune disorder, and there are a variety of antibodies whose presence would mean I almost certainly have the disorder. But the false negative right is pretty high, so if they don't find them, it doesn't mean much.) This would involve a spinal tap, a new diagnostic procedure to add to the already long list.
She also gave me the name of a rheumatologist at Hopkins who's a very good clinician, and I'll either see him or someone in DC soon. One theory is that I have something neurological and something arthritic, and the combination is what makes all of this so confusing, so seeing a really good rheumatologist seems like a good idea.
So far I know of two people who have linked to me from their sites, and one of them spelled my name right. small d, Big J
isn't a great name, but I thought at least people would take it as a helpful spelling hint. I guess not.
(Note: she may have fixed it before you click the link. In fact, if I hadn't chosen to publicly mock her, nobody else might ever have noticed. It hardly seems cricket. But I watched Lagaan
the other night, and it turns out cricket players aren't very nice. Who knew?)