Steph, I'm very glad that you're feeling better. And I apologize but I'm going to be a "wet blanket."

Yeah, you should celebrate every success when you have MG. Absolutely. But please don't forget that MG pushes back when you push it. It's the biggest autoimmune bully on the block! You might think you have it under control but then you can push yourself and all that ground you gained on it disappears. And then you need even MORE drugs and can have even more side effects.

There is a point where most MG experts won't go with Mestinon. Yes, there are exceptions to this but it's not usually done with newly diagnosed MGers! One, they won't go shorter than the two hour dosing. Two, they don't go above the magic 100 mg. per dose. Why? The answer for both is the same: They don't want you to flood the neuromuscular junction and have a cholinergic crisis.

There are a lot of studies on this, so you can go to PubMed and do some research.

In case you don't know, since you're new at this, a "myasthenic crisis" is when you don't have enough acetylcholine and get weaker. A "cholinergic crisis" is when you get too much acetylcholine and get weaker. You don't want either one to happen!

Some doctors might think that since Mestinon wears off so quickly, what the heck, what harm would a bigger or sooner dose do? The reason is that it doesn't take more than a minute to crash MG and go into a crisis.

And taking a bigger dose during an activity (or before and after) makes sense. But if you take a larger dose when your body doesn't necessarily need it, you can get too much. It's a "supply and demand" situation with MG. If your body isn't using up that extra acetylcholine, it sits there in the neuromuscular junction wreaking havoc.

I don't want to lessen the big accomplishment you have made. The problem with MG, however, is that it is not a "static" disease and you need to really understand all of the potential issues with it. I hope you understand why I felt the need to bring this up!

Annie