Me and Dystonia
I just noticed that there are quite a few blogs devoted to Dystonia which I think is awesome. The reason why I didn’t do it with my blog is because for me as a person, my situation is overly complicated. Treatment has been a difficult thing and chose to do more poetry to keep my mind off the Dystonia. However, I could have two blogs and just devote the other one to just my dystonia. I just thought about that. hmmmmmm? Might be a good idea but it would take me a minut to set everything up and get followers and so on. It would be a challenge but it wouldn’t be too hard.
Today, I’ve decided that I will post more about how I am doing and where I am currently with this illness. But I want my blog to be random and I post things that way on purpose. Part of me coping with my current condition. I am also about ready to change this theme. As a friend said, it doesn’t seem to fit me. I agree.
So from now on, I post about my battles with dystonia and may add a few more videos if I can. I have been having a terrible time walking as I mentioned and I have also begin to start shaking when I get too stressed. My left leg has began to twist even more but it doesn’t hurt. Just makes it harder to walk and throws my balance off. I have decided to keep taking the Klonopin. I have developed a system over the past few days. It seems to be working pretty well. I am rotating between Klonopin, Zanaflex and Sinemet. This has straightened my legs out quite a bit. As for the pain, it is still there but I know it will probably remain.
I am being tested for ALS on May 17. Although the doc doesn’t believe I have it, he does want to rule it out. We have ruled out almost everything else. I have found a Dystonia specialist in my area and am trying to get an appointment with him. He specializes in Dopamine Responsive Dystonia so I hope he can be of some help to me. I have found a new Neurologist but she is booked until June. She is a great doc and my daughter just adores her. She is well worth the wait.
Well that is all the new information I have for now. Still learning to deal with this shaking and getting some info on a few other things. Whatever info I get, I post it here. The poetry will continue though as it is my outlet and keeps my spirits up.
Posted on April 27, 2012, in contortion, dystonia, fibromyalgia, general, health, life, medical, pain management, people, spasticity and tagged autoimmune diseases, Chronic pain, Clonazepam, Conditions and Diseases, Dopamine Responsive Dystonia, Dystonia, Health, Klonopin, Neurological Disorders. Bookmark the permalink. 10 Comments.