Wow. Thanks, Jana.

So you're pretty much in the boat I am in. Steroids cause too much fluid retention, make me nutty and cause me to have instant infections. Since I'm allergic to lots of antibiotics, immunosuppression is out. Can't do the "fluid" alternatives either (IVIG and plasma) for fluid imbalance reasons, capillary permeability and an arachnoid cyst. Phew. That felt good to get out.

That's so weird that summer is good for you. Are you sure you don't have one of the CMS weirdo genetic disorders like a sodium channel problem that causes not enough acetylcholine? I melt in the heat.

I know, I have friends who can't let go of work. Can't blame them. If I could work, I would. But I'm not willing to do all the drugs in order to attempt it. Choosing drugs is a good choice for some people though.

These are very tough decisions to make. I wish none of us had to make them. It should all be good.

I'm glad you didn't stay dead after plasma. I'm sorry you went through that. I haven't had plasma but have had severe dehydration and almost hypovolemic shock. It's damn scary.

And it sounds like you have to pamper your immune system like I do. Which is a good thing for everyone to do but it's not always that easy. I sleep as much as my body tells me to. Then sometimes I ignore it and drink coffee anyway.

It's such a crap shoot. You don't know how you'll react to the treatments. And some people can't even take Mestinon. And then so many of us have other medical problems or diseases. Not very fair!!!

Anyway, thanks for being so open, Jana. I appreciate it.

Annie

I'm not okay right now but I like your definition of "MG okay." I'm not in a wheelchair or on a respirator or in the hospital either.