Hi everyone,
I haven't written in a long time but the recent
activity it's made me want to write in. I'm 28 years
old and was diagnosed with Miyoshi Myopathy about four
years ago. They did a couple of tests to confirm and
my muscle enzyme level was around 30,000. They felt
confident in the diagnosis but then they did a special
blood test through the Mayo Clinic and they found the
presence of dysferlin. Has anyone else had an
experience like this? I just find it a bit odd that I
was diagnosed with a dysferlinopathy, which to my
understanding means that you don't have dysferlin, yet
here I am with dysferlin. I wear the Blue Rocker leg
braces on both legs and my doctors have been impressed
with my mobility in them. They are still a pain in the
butt to wear, but they do help so much. This is a very
scary and sometimes lonely diagnosis to have so while
I'm sad that any of us have to go through this, I'm
glad to hear from you all every once in a while.
Good luck and take care,
Bryan



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