Thank, well, I'm not sure it's really refractory: I haven't tried IVIG or PLEX, which may help. But I seem to have a real risk of acute kidneyproblems, because of something called cryoglobulin I believe.
I may try this anyway, because I think this is more an option for me, then the piles of medicine they want to give to me when I upper the prednisone dosage. It's true what you say: there is proof IVIG / PLEX helps people with MG, so I might try this before I try something real experimental.

I do think positive about symptomatic care. Especially my mounth and breathing problems I want to get better. I really want to eat normal food again. However, it doesn't seem to get any worse then it is now luckily. I have approximately 2 hours a day I can make myself clear, but the other hours of the day no one understands a word I'm saying, or I can only make sounds. And it's something no one can help me with (I mean, I use a wheelchair and stuff, and loads of people help me, I can type on the ipad -normal computer is to hard to use-, but I just want to talk more, laugh, I don't know...it feels weird not being able to talk fysically.)

Ventolin for MG? I have had it several years ago for asthmatic problems, never heard of it being used for MG.