Welcome to the group, BillG. I appreciate how frustrating it must be
awaiting a diagnosis--it certainly was for me. From what I've read
and also heard from researchers, many if not most, people with
dysferlin deficiency are originally diagnosed with polymyositis and
are put on prednisone, to no avail. Having the protein test available
allows for the first time, a real diagnosis to be made. The next step
of course is understanding the pathology and devising treatments.

Best wishes,
Brad