Tracy, What you are describing is being on the verge of an MG crisis. I mean right now.

That day in the lab, you should've dialed 911. With MG, there's no knowing if you could've stopped breathing.

Even if you've had MG for a long time and have been "dealing" with it - which is admirable - it can still "take you out!"

No MG expert would diagnose a patient with MG and leave it at that! Especially not when they've been progressively worse due to a lack of proper treatment. It's unethical.

Did he even mention Mestinon? He should've put you on a trial of that immediately.

You should be having breathing tests done to see how bad you are. You may not even know how bad you are since you've gotten to the place you are in fairly gradually. You know the "saying" that a slow burn will kill you but a quick burn will save you.

It doesn't matter if it's one set of muscles that is severe or a few or many. It's the severity that should prompt you to go to the ER. They can prescribe Mestinon too, you know!

This is the kind of lazy doctoring or "can't be bothered" doctoring that is utterly useless and makes me go nuts. You need help now. The best way to keep MG in good shape is to maintain an even state of muscle weakness/not muscle weakness. In other words, you don't want to keep going downhill or go up and down with weakness. It's harder to recover, and takes longer, from where you are right now than if you were doing relatively okay.

Don't hesitate to go in, day or night. I'm so sorry you are dealing with all of this and mainly on your own. Please take care of yourself.


Annie