Xa.......my neurologist doesn't know what else I may have, but have had 'it' since birth! It took until I was about 13/14 yrs old to diagnose DRD. By the time I was 12, my dystonia was so bad that I could barely eat properly, my speech was so slurred that it was really difficult to talk, I was unable to walk and had muscle spasms that no one had seen before! I used to have to rest at school in the afternoons, either by putting my head on a pillow on my desk or by lying down on a mattress in the classroom because of my spasms. Then I was put on Sinemet and that's when things changed, although I was still having spasms and having to rest. Gradually, the spasms lessened and the fatigue isn't as bad now. I do still get tired but no more spasms (although it's taken all these years - I'm now 38!) I'm still using a wheelchair full time and my speech is still slightly affected but, compared to back then, I'm great :-)Beverley.....keeping a diary is a great idea. Why didn't I think of it??? It could be of some help, at least. I'd never heard of Chiari 1 malformation so I've just looked it up! I'm so pleased the op helped your neck and shoulder pain. I have Botox injections in my neck to help with pain so I would say go for it in your leg, as long as your insurance is willing to pay for it! I think you're quite right in saying researchers could learn alot from visiting this forum. You never know, someone might be out there....... :-)
