I'm a 43 year old male. I have Muscular Dystrophy due to Dysferlin deficiency. This causes both Myioshi Mypathy (distal) and Limb Girdle type 2B (proximal). The latter being more rare. My MDA doctor (he's awesome) says that out of 800 registerd M.D. patients in my area, that I am the only one. What's more; my "Dysferlin Gene" is intact. There is nothing wrong with it yet I am missing the protein. I am having more muscle staining, etc. done at the University of Iowa.

Anybody else out there frustrated with the fact that you have a Muscular Dystrophy that no one can quite give a name? Believe me, I understand.

It's a drag but my spirits are good. I've got GREAT doctors trying to help me and my progression is slow.