Hi everyone. I am glad to find this group, and I look forward to
swapping thoughts, questions, info back and forth. The main thing I
want to address is rate of progression, and I am quite curious about
other LGMD-2B or MM patients' experiences and rate of progression.
Just a little of my background: I was extremely active and excelled
in most sports through my middle school / early high school years.
Somewhere between 8th and 10th grade, I began running much more
slowly, had difficulty jumping, and began losing much of my athletic
ability. Just thought I wasn't exercising, stretching, working out
correctly. Senior year in high school (1995), began tripping and had
difficulty climbing stairs. After muscle biopsy, EMG, etc. the docs
diagnosed me with Miyoshi. Prognosis was very slow progression, only
distal muscles, etc...2.5 years later I needed orthodics to prevent
toe-drop. 2 years after that I began using a manual chair. No longer
is it only distal, but proximal as well (biceps, deltoids, hip
flexors, etc) , so the diagnosis is now LGMD-2B. Couple of years
later, I began, and am now using a powered chair. So, I was diagnosed
at 17 (1995), I am now 25. Ok, maybe that was a lot of my background,
sorry. This progression seems quite quick compared to the research
reports. I would welcome anyone's thoughts.

peace...