Lois,
I know Tennessee and Cleveland aren't exactly close, but maybe a trip to the CLeveland Clinic would be good. I think that they will confer with your primary doctor once you have been seen there. I went to Mayo and the doctor there talks with my local neurologist and they go from there. Otherwise there's a Muscular Dystrophy Clinic at Baptist Hospital in Nashville, maybe your doctor can refer you there?
Gabe