I've come a long way, and enjoy meeting others in the same boat. Only been on Carbidopa- levodopa about a week. It's working like a muscle relaxer for me. I need to learn more. Would this mean I carry the Parkinson's gene? Anyone know of trials?
Lucky me has several things going on. Just like most of us here. But my vascular disease has complicated things. I don't understand internal tremors. Because of my pulsatile tinnitus, my vibrations have a certain rhythm and I would swear it's my heart...
I would love to chat more on dopa- responsive Dystonia
Last fall I met a wonderful neurologist specializing in headaches. She diagnosed me cervical Dystonia. (This is following many years of physical therapy and so much agrivation with myself and doctors in general... even closed my shop & stopped sewing after 26 years.)
I tried Botox twice and I decided I would enroll in a study. There is an observational study on Dystonia in my city, the only requirement was an evaluation by the University movement specialist. I waited almost 5 months. What a joke! She simply stated I don't have Dystonia & refered me to pain management.
I went back to my neurologist and had a great discussion. You see, I don't have any tremors. (Yet, to be honest, I still haven't figured out what these internal vibrations are. I always thought heart related because they pulsate at times or feel more like anxiety...I just don't know any more. Lots going on.)
We both decided pain management was not a good solution for me and she is discontinuing Botox for me because she'd like the guided Botox by someone more skilled. (She does not have the tool. I guess headache treatments are different, specific sites...)
Good news. She refered me to an ortho/ neurologist. More good news, I'm doing pretty well on Carbidopa- levodopa. Can't believe how much movement I've regained! I can see the other drivers on the express way!