I am so glad to know that you all are here.
This has been such a long, emotionally and physically draining ordeal
for me and my family. I was told 2 weeks ago that I suffer from
dysferlin dysfunction. You would think that I would know a little
more since I am being seen by Johns Hopkins physicians and the
researchers at National Institutes of Health in Bethesda, MD. And
this was my second muscle biopsy and the last one was done on 11/5/01.
I have had to make up my own treatment.
I too was diagnosed with PM in 1999. The drugs almost killed me.
I am not sure what I should or should not do. I am not even really
sure of how I feel. No one really understands, since we look like
everyone else, except when we fall and can't get up. ( At least in my
case)

Thanks for being here and I thank God I found you,
Kendra
29 yo
Baltimore, MD