Quote:
Originally Posted by Peony
Hello all, it's been a while since I've posted. I'm having a very bad day. It's been 3.5 years since my diagnosis, with mostly just a big tremor in R. hand, until the last few weeks. Now I also have painful, almost crippling dystonia in my R. leg and foot: toes curling under, ankle turning under, cramping and stiffness, giving me a big limp that makes it very difficult to walk. Quite upsetting and depressing. I had resisted meds due to concerns about side effects, relying instead on exercise and supplements, but finally 8 months ago my MDS convinced me to try carbidopa/levodopa 25/100, 1 pill 3 X day. It didn't seem to help the tremor at all, so she increased it to 2 pills 3 X day a few weeks ago. The dystonia started to develop about 3 months ago, but has really gotten bad since the dosage increase. I worry that the dystonia is meds-induced and wonder if I should stop taking them. Any advice or experiences with dystonia would be greatly appreciated. I know you can't suddenly stop meds, but how gradually must it be done if I want to try it? Many, many thanks.
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our former neuro, who I think has probably the best grasp of how different drugs actually function in the brain, what a concept, told us long ago that sinemet does nothing really for tremor, and that was also our experience. Unfortunately, the mirapex does, and while we hate the side effects, our two attempts to get off it so far have failed. I guess my point is, since sinemet doesn't really help with tremor, at least not for us, taking more of it definitely won't do anything but add more side effects. Might want to do some research about tremor-specific meds, there are excellent comments on this forum about that.