Erin, After your chart "accidentally" fell open, did you talk to your neuro about it? Acute MG is not good. If I was in that bad of shape, I wouldn't be making a trip to see anyone. I know that's not what you want to hear but what if you are in another city and need to be hospitalized for a while?

There are MGers out there who do have it bad. That's probably why they aren't posting here. They don't have the energy.

This is one of those times in life when you need to put on all the stops. You need to settle this disease down. Try not to concentrate on mortality rates and percentages. Concentrate on what you CAN do. Don't talk a lot. Don't go outside. Get groceries delivered. Don't stand!!

It's worth a trip to your internist to make sure something else isn't adding to the situation. I know they take blood a lot but do they regularly check for infections or thyroid problems? Have they ever done an erythrocyte sedimentation rate? That is sometimes high on those who are on immunosuppressants if they have an infection when the white count is ok.

You definitely don't want to become "chronically acute" and not have meds that work. MG needs rest. Lots of it. Just sitting takes a lot of muscle strength when you are not doing well. An aggressive disease needs aggressive action (or inaction) on your part.

If you haven't had that frank discussion with your neuro, now's the time.

I'm really sorry you aren't doing well. But please don't concentrate on the negative. Think about what you can do to make this better. Every single person here will understand if you take a little break. When I had my crisis, I was in bed for a month straight. That includes only trips to the bathroom. You do NOT want to get that bad.

Hang in there. And try not to let a "label" freak you out. You should take this seriously but so seriously that your immune system won't like it! It needs to laugh.

Annie