Guest guest Posted April 23, 2005 Report Share Posted April 23, 2005 I have a question. Does anyone out there have weakness in their hips? I just got back my genetic testing for SMA and that came back negative too. Now after 20 years, we are trying to figure out what I do have. My doctor says it is probably not CMT due to the way my hips are affected. A friend described me as walking like a mermaid! I think NIH is now going to take on my case which will be fabulous because maybe then I can get into one of their clinical trial studies. Maybe I am the first to have a new disease and it can be named after me!!! (LOL) I believe they are going to want to do another muscle biopsy since it has been 20 years since my last one and maybe now they will look into other conditions. They do still believe that it is something under MDA. I only hope I can find a group as great as this one has been, although I do plan on continuing to read and post and keep everyone informed on anything new I learn. Jackie Quote Link to comment Share on other sites More sharing options...
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