Anyone have any experience with this? Was diagnosed last week. We found out a year ago it ran in our family. I thought I might be a carrier I didn’t realize I could have it. Going for EMG and blood test to figure out how bad it is (ie how many repeats of the gene I have). I don’t feel too much muscle weakness yet. Mostly in my hands. Its affecting my body more than my muscles. Had to have my thyroid removed 3 years ago. Lots of fatigue especially after exercise. My hands get stiff and swell in the winter when its cold. My eyes don’t produce enough tears anymore. Spent over a year at so many different doctors trying to figure out what was wrong. At least I have my answer now
No experience, just wishing you strength, and the best test results possible.
Talk with the Muscular Dystrophy Association. They may have support groups and knowledge about academic centers that are researching treatments. There are a lot of advances in treatment with other forms of muscular dystrophy.
