[susan_mela]

My husband and I talked, and we recall checking back in with my neurologist a week after I started Mestinon. This would seem to indicate thereÂ’s not much, if any induction time.

Mestinon does not work for everyone. For some it does not work as well as for others. You seem to indicate that a bit of success is being had. I know folks for whom it does nothing. Being able to chew again does sound like an improvement, but was it a natural fluctuation or the Mestinon? Are you seeing improvement within 15 minutes of dose? You should. Is it obviously wearing off long before the next dose is due? That might indicate needing more. There are nuances. A doctor would be more knowledgable as to these.

If your wife had gall-stones, and still has her gall bladder, could this still be a problem? A sick gall bladder is no fun and will cause no end of digestive problems.

60 mg 3x a day is just under half of the maximum IÂ’ve ever taken with generalized MG, even before IVIG treatment, if that helps. ??? This will vary from patient to patient. Just offering another case.

MG does make you feel crappy. No way around it.

As for the pain, I was always suspicious about the “MG does not cause pain” statement. As for my own situation, I’ve had pain from muscle spasms for at least a year now. These have developed further, and indeed did not have to do with MG, and we are hoping it’s an IVIG by-product (long story), not a new diagnosis. If it is a new diagnosis, it’s a BAD one. Hoping the IVIG is causing a false positive.

If a strong muscle is being overused to compensate for others not working, normal over-stressing kind of pain can occur. Then itÂ’s time to rest, or stop. I will also admit to having a vaguely sore sternum perimeter when my breathing was extremely weak during both cases of crisis. Nobody has really made a big deal about that. It was not an extreme painÂ… more like a vague soreness of fatigue. ER doctors will not understand this. Unfortunately we need to learn doctor speak for such things. Otherwise, all (haha) MG is involves the weakening of muscles in degrees down to complete non-functioning. ThatÂ’s it. Lock jaw seems like the anti-thesis of this to me.

I know all of this is very scary and beyond aggravating, especially when you feel so helpless on the part of your spouse. It takes a lot of patience and a little hope to not panic and learn to watch patterns, sensitivities, and in some ways learn to reroute how you do things to lesson symptoms that way. Please also be aware of stress. It is a huge symptom trigger. I really did not play around on my own with increasing and decreasing Mestinon at first, although there were fluctuations. Even now, I am very cautious. While I was getting used to this, lifestyle was focus #2.