Thanks everyone for the links- I have had a muscle biopsy done and it did not show anything specific-I think it was fairly normal. I had genetic testing done for some of the muscular dystropophies but they came back normal. The EMG done all come back abnormal. I have had several of those. The frustrating part is that most of the genetic research was done on disorders that were autosomal recessive and I could have told them that they would not find anything there as I know it is x-linked and autosomal dominant.
The teaching hospitals that I went to were disappointing. I spent a lot of money and it seemed they did not listen to me at all. There Emg testing finds abnormal results but they seem to ignore most of ny symptoms. The doctor at Emory gave me some medicine to take and said it would cure me. It was anti-siezure medicine and my local neurologist had already tried it before and he knew this. When I went back I told him that it helped with cramps and the fasiciculations but my muscles were still stiff and sore which is my biggest problem. He said you don"t look stiff and seemed to be mad that his cure did not work. He said for me to go back to work that I could sell real estate or insurance. I said what should I do about the stiffness and soreness and he said get some exercise. If I could exercise I would not have been there to start with. As far as my work history I had worked the last 25 years as a contractor and have never been out of work before this happened.
My primary neurologist that is local is very good and is understanding and does not want me to work. I want to work but I don't want to hasten this disorder. My father worked until he could barely walk and would sit on a stool or lean against something until he could no longer get away with it and finally quit work. All family members that have had it have retired early in their fifties. Someone in a previous post mentioned denial and that is very true. My cousins who have it deny having it and one walked with a walker and the other has to use a cane. I am the only family member that has pursued a diagnosis. My neurologist now has decided that we will eventually find out as it progresses but this is very frustrating.