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 *** 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.
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