Hi Suzi, nice to hear from you!

Your diagnosis story sounds quite difficult. I was somewhat fortunate
in that, although some doctors I had consulted while I was trying to
get a diagnosis thought that I might have had polymyositis, nobody
actually put me on any steroids or immunosuppressants for it. I was
eventually put on prednisone and azathioprin by Robert Griggs of the
University of Rochester, although he was almost sure I had Miyoshi.
At the time Dr. Griggs was involved in the first large-scale clinical
trial of prednisone on Duchenne MD, and he wanted to see whether it
might help Miyoshi also. After a couple months it was clear that it
didn't, so we stopped.

I do hope that the word gets out among neurologists to look into
dysferlin deficiency before putting everyone who has inflammation in a
muscle biopsy on steroids and immunosuppressants!

Best wishes,
Brad