Um, Erin, you HAVE been socializing! Medical appointments are very tiring. Speaking to anyone is technically socializing. And those bus trips . . . exhausting! How far do you have to walk home?!

What your MG can tolerate is obviously not much right now. You may have to reduce your activities—even washing dishes! I didn't realize that you had a feeding tube! You can't get the same level of nutrients from those. That could actually be adding to your overall weakness. Can you eat any food? There are nutritional drinks that are even better than tube food!

The weather doesn't have to be in the 80s for acetylcholinesterase to increase. I have problems with anything above 70. But that's me.

The nurses are not doctors. They can't prescribe. They can commiserate, but that's not helpful to your MG!

Naps are one of the first signs of MG. And one of the first signs of MG becoming worse. MGers have to get enough sleep. It's the same as a prescription.

Nothing else matters while you are getting worse. You have to reduce activities (even simple ones) and rest more. What is concerning is that you can become weaker so slowly that you don't recognize how bad off you are. That's dangerous. Don't kid yourself into thinking you're okay only because you have IVIG.

I hope you can work something out with your doctor. It isn't fun when MG is worse.


Annie