What a great resource for my recent diagnosis! Thank you. I have
been chasing the wrong thing for over 10 years now. I had high
AST/ALT counts (liver enzyme) and went to see numerous
gastroenterologists. Many specialist later, including a liver
biopsy that proved normal, a doctor decided to check my CK level.
This was 15X normal which was causing the elevated levels of the
liver, and from there the Myoshi Myopathy diagnosis was very quick.
I'm turning 40 and have no noticeable symptoms other than very thin
calf muscles and difficulty standing on tip toes. I am a fairly
active runner and cyclist and am trying to understand what to expect
in terms of the progression of weakness. In the few examples that I
have come across, the onset/progression of this disease is
indiscriminate. Can anyone in a similar situation provide a
perspective that is less vague than my doctor?
Thank you.
Tristan