they said the muscle supports CMS, but my neuro things it is auto immune since I didn't have any problems until I was 30. That's one of the major reasons for the follow up testing at UCLA. They might do another biopsy and will also do ultrasounds of the muscles and additional blood test. I call them tomorrow, so hopefully i'll get in soon. ( =

it'll be interesting to find out. from what i read, if it's CMS then it's a recessive gene (Chromosome 4p16.2; recessive) and treatment will be with a different medication called Ephedrine. Mestinon has shown to sometimes help people with this, but eventually begins to wear off. that must be what i am experiencing because even though i am drastically better than if i didn't have any medication, i am starting to see a decline in my progress. i'm having more flare ups. getting weaker more frequently and fatigue is off the charts.

like someone else said above, i get tired doing dishes. i take a nap after i take a shower cuz i'm exhausted. doing my hair...don't even think about it, that's only for special occassions! i can't keep my arms up long enough to do all that blow drying...LOL. it's funny because when i read the description of limb-girdle MG it says it worsens with exercise, which is true. but when i think about it, it seems like it worsens with any kind of movement. another thing i thought was interesting is that there are less than 70 diagnoses cases of this...looks like i may have won the neuromuscular disease lottery!