Dystonia Bulletin Board

I told him that I had stopped taking the SSRI Antidepressants, and the Baclofen. All I am taking now is 30mg Valium and Omeprazole. I even stopped taking the Flomax. Symptoms are exactly the same, and not depressed as much as I was!!!

He ordered a blood test (although he is just ruling it out) for Stiff Man Syndrome. And prescribed Carbidopa/levodopa in the form of Sinimet. This is my sixth MDS Neuro, and the FIRST to even CONSIDER dopa-responsive Dystonia. He has also not ruled out DBS. When he had me stand after nearly 20 minutes of conversation I thought I was relaxed. WRONG! My entire body went into a spasm and he had a hard time getting me back in the seat of my scooter. I think I may have broken his toe! OOPS!

I just feel like I am on different tracks, that may or may not lead to nowhere, but at least it is not the same path many times taken. This is finally reason for hope. Not necessarily for a cure, but maybe some relief. That would be reason enough to jump (not literally!) for joy.

Wish you all the same feeling I have right now. I can't explain it, but you know what I mean. Best of luck to all of you.

And hey, Sparky, the name suits you because you did a lot to jump-start me. Car is fixed, wife is working, neighbors are more helpful than I have ever encountered, and I never would have asked for or accepted as much help as I have gotten these last few months, including all on this BB.

Can't wait to pay it forward. I know I will be able to someday. I am sure of it.