Quote:
Originally Posted by Stellatum
I know! Somehow it would just seem so comforting to know that there's something "normal" about this weird disease, even if it was just "normal for me and one other person." I'm sort of diagnosed, but I'm seronegative and had questionable SFEMG's. So in the back of my mind, I'm always wondering if I really have MG.
...
The differences we describe are at least partially due to different muscles being affected. The other day I had to have my husband physically lift my foot onto the running board so I could get into the van. But once my foot was up there, I could lift the rest of my body. Apparently, those two actions use different muscles. And recently I've had trouble learning forward when I'm leaning back on the couch. That's new. You never realize which muscles you're using until you can't use them.
Abby
|
I know this is an older thread, but wanted to comment that these statements resonate strongly with me. Especially
"You never realize which muscles you're using until you can't use them." It is so weird to discover "Oh, I can do THIS but not THAT", when both actions SEEM like they would use the same muscles. "I can STAND but not WALK" is one of the weirder ones to me. You'd think if you could support your weight and stand, taht would be the hard part, but then none of the muscles to move a foot forwards work at all.
I also like
" I'm sort of diagnosed, but I'm seronegative and had questionable SFEMG's. So in the back of my mind, I'm always wondering if I really have MG". I completely am in this situation. On the one hand, I'm very happy to have a neurologist willing to diagnose me, and I do indeed respond to Mestinon...but on the other hand, learning I'm misdiagnosed would give me a second chance at hope. If I'm misdiagnosed, maybe that's the reason I'm not "normal" again, and I would be if only they could give me the right medications. (Although, as I'm learning, my current state is fairly "normal" for MG, and probably not a sign of being misdiagnosed).