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Old 12-02-2013, 09:44 AM
Stellatum Stellatum is offline
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Join Date: Feb 2010
Posts: 1,215
10 yr Member
Stellatum Stellatum is offline
Senior Member
 
Join Date: Feb 2010
Posts: 1,215
10 yr Member
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That's one of the frustrating things about MG--it fluctuates so much. What you describe is typical. I hope you will go to your neurologist to get your medicine adjusted, because your symptoms are breaking through. You might be told to take the Mestinon doses closer together, or a higher dose. You might get your Pred dose raised. You could be put on an additional long-term immune-suppressing drug like CellCept or Imuran. And if you get worse, there are infusions (IVIg) that work really well for some people.

If you get a new symptom, or you get extremely weak, or you have trouble breathing, don't mess around. That's an emergency. Go to an ER.

And for goodness' sake, don't fall into the trap of thinking you're lazy or crazy! For me, it's not just that symptoms fluctuate; it's that when they're mild they can be so pervasive that I can't pinpoint them. Recently I've noticed I'm better--and the way I know that is that the house is clean. I mean that when my muscles are really weak, it's clear what's going on--but when my whole body is being mildly affected by the MG, nothing stands out (like double vision, or legs that won't hold me up). I feel like I just don't feel like doing anything. I feel lazy. But it's not true, because when I'm generally better, I do feel like doing things, and I do them. So I say, look, the house is clean. I must be better!

I hope that made some sense. Meanwhile, go to the neurologist!

Abby
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"Thanks for this!" says:
pingpongman (12-02-2013)