It may be time to revisit the idea of steroids.

I have trouble classifying my symptoms with regard to severity because they're so episodic. If I'm not having an "episode" you would call me mild. I walk normally as long as I don't have to be on my feet too long. I tire easily--much more than normal for my age--and feel a bit of weakness during the day if I have to hold up my arms. I can't sit too long without resting my neck. That's about all. But during an episode, you'd call me severe, because I can't walk at all--I collapse. The episodes last an hour or two.

Last time I saw my endo, I asked him if we could look into channelopathies (I'm seronegative, and don't response to Mestinon. My response to IVIg is questionable). He said he'd talk to his partner and get back to me, but didn't, and I didn't push it because I was feeling so much better.

I've had this disease for about three years now, and I'm still baffled.

Thanks,

Abby