Shalynn, If you have MG, yes, Mestinon would've helped!

The more you do, the worse MG gets. And it can get exponentially worse, like the Richter scale. If you don't get enough sleep, it can get worse. The more your body gets heated up, even in cold weather, it can get worse. Socializing is probably the hardest thing to do because you use so many muscles and talking is hard on breathing. In 2005, I had an exacerbation of my MG from socializing with family. It tanked my breathing. So getting used to thinking about every little thing you do as an MG stressor takes time. Every activity takes away from the muscle strength you have. A good night's sleep is essential!

This is what my neuro had me do, which you should not follow because you aren't me. Though have a conversation about this with your neuro. He had me increase the time between doses first, so that my body was getting a steady stream of acetylcholine. Then he gradually increased the dose amount. It's important that you get used to taking it and knowing how it affects you first before you have too large a jump in dose.

I think, from what you described, that you need to tell your neuro that you were getting much worse. You do know that you have to be off of Mestinon for the tests, right? When are you having them?

If you ever get to the point where you can't swallow or breathe well or a have sudden increase of weakness or bad generalized weakness, it's time for the ER. Don't hesitate. And don't panic! MG can go downhill fast and there's no way to predict how quickly that will happen.

Just wait until you are drinking something like LaCroix, with bubbles, and it finds its way up into your nose and eyes. Or when you are taking a shower and the water is running down your face but ends up going up your nose. MG doesn't pay attention to gravity. Muscles are what moves food and liquids through the GI tract and when they don't work, the food and juice goes elsewhere or nowhere!

Make sure they run the MuSK test, if they haven't already.

Annie

Yeah, it takes a while to realize what kinds of things are wearing you out! Socializing doesn't sound exhausting, but it does me in every time. Also, church on Sunday--I feel like I can stand for hymns and prayers just fine--there's sitting in between--but it wears out the muscles in my sides, and by the time it's over I can't walk well.

Someone said that the effect of Mestinon is hard to notice, but the effect of not taking it is easy. That's how it is with me. I often feel like it's not helping, until I forget a dose and end up on the floor thinking about the inadequacy of my house-keeping (the dust is just a lot more noticeable from down there...).

Abby