[ras1256]

Hey Xmas,
I've seen a couple of posts where you have mentioned you need help differentiating what you're feeling. I can tell you how this goes for me.
When my MG is starting up, I don't feel like going to work, putting on make up, doing my hair - or even care what clothes I wear. After it's gotten going badly enough that I can't go to work, there are many days I never even get out of pj's, brush my hair or anything but absolutely necessary things (food and toileting!).

When I feel good it's actually difficult to keep me from doing more than I should. It's like when you were sick as a kid - when you felt better you FELT GREAT! It's the same here - the relief from the fatigue and weakness of MG make you feel better than you really are, so you have to actually train yourself not to do as much as you feel like doing.

Being out of shape won't keep you down, once you feel good.

The hardest is the difference between the disease and too much Mestinon. Too much can cause the weakness and fatigue as well. Watch for excessive perspiring, and muscle twitching. For me, my "normal dose" can be too much in the morning, but not enough in the afternoon. It's quite the balancing act, when you start to get better especially. My neuro when I went into remission had a terrible time getting me to stop taking the Mestinon. I was scared to death to go without it, but I actually got better when I stopped (until I came out of remission again anyway).

I hope this helps you. I know it's so confusing and after the struggle to get diagnosed and having people tell you you just need to get up, or need to get back in shape (My doc told me that before I was dx'd), or you're lazy, it's easy to think that's what's going on. Believe me, though, when your MG gets under control - NOTHING will hold you down!

Originally Posted by xmas 25

how awesome that things are going great! it gives hope to me-i'm in the baby stage of learning mg,limitations,meds etc. i pray for those days of mostly endless energy. i wouldn't even mind just laying down for 1-2 hrs in afternoon. how do you differentiate being out-of-shape,in a lousylazy rut or the medicine side effects or the disease itself?that seems to be my problem. i'm afraid to push it but not sure of what i feel? thanks for showing the light at the end of the long tunnel!!