don't know what is going on..
 

Hi all,
Usually I'm on the RSD board, so I'll give you all a brief (if it's possible lol) explanation of what is going on. I've had rsd for abt 5 years. Started left foot, now both legs, and the right side of my body to should blades. I've had 2 spinal cord stims. First one moved, had replaced 2nd one stayed in for a little over 2 wks. developed MRSA infection under the battery. (This was a little more then a year ago.), I just had a pain pump implanted 3 wks ago. I've developed jerks or twitches over the past several months. Maybe 6 or so. it started with jerks in my legs. Kinda like the ones you get when you are falling asleep. THen it moved up into my trunk and now it's pretty much everywhere. I've actually jerked so hard a couple of nights that I lifted myself off the bed. Scared the daylights out of me and poor hubby. anyway tried requip. nothing. THe drs now have me on Baclofin sp, and it seems to help the real violent jerks, but even as I sit here typing in bed, (surgery just 3 wks ago, and I'm still weak in the back strength). my calves are jerking, but not super strong. Dr said if this doesn't work then I need to be evaluated for maybe eplipse. I'm not being effect mentally, just physically. I'm not blacking out or getting lighheaded or anything, just twitching. I'me getting Duiluidad in my pump. still a low does, but it will be going up over time.

Any thoughts or suggestions?

Hugs
Mary

I am not a doctor or a specialist, just a person affected by movement disorders. To me, it sounds like you might be experiencing Myoclonus. If you go to the wemove website, www.wemove.org ,you should be able to get more information.
Best Wishes.

Evonne,

Thank you for your reply. I've never heard of that one and I'm going to check it out. I know I don't have some of the other diseases that the drs. mentioned, but I just feel that we need to be active in our own health and if we can get information on things we can help our drs.

Thank you again
Mary