I thought I would see what experiences others have had...

When I first started to have symptoms (20 years ago) it seemed to be
very difficult to find a neurologist who had any idea what to make of
my symptoms. Also, my muscle biopsy seemed to confuse people: there
were some inflammatory characteristics, which led people to think for
several years that I might have polymyositis instead of a muscular
dystrophy. After having read the recent literature, it turns out that
inflammation is a typical characteristic of dysferlin deficiency, and
that patients are often misdiagnosed as a result.

Have things improved significantly in the past 20 years in terms of
getting a correct diagnosis?

Brad