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.