Just following up--I asked my neuro if we could consider a monthly one-day maintenance dose, and he liked the idea. He said he's never done it for MG before (he does it for CIPD), but it made sense to him. He agreed that it's reasonable to treat symptoms with a small dose before they get bad, instead of waiting for me to crash and then giving me five days of IVIG. So, thanks again, 4-eyes! I have high hopes for this new plan. I know that my situation is good compared to that of many people here--I never have breathing trouble, my vision is OK, and I have the help I need at home and no full-time job to worry about. But still, you know, I'd like the rest of my life back, right? I'm counting my blessings but at the same time trying not to settle for too little.

Unfortunately, I probably have to wait until next Tuesday to start the IVIG. Insurance won't pay for home infusion, and the cancer center is short-staffed. I nixed the accelerated infusion idea (not with my history of migraines!). So, I'm sort of stuck. If I were in danger I could go to the ER and do this as an in-patient (and I will if things get hairy).

Thanks again for your help, everyone. It's so good for my peace of mind to be able to run these things by so many people with experience.

Abby

You need to stop that "talk" about you not needing this as much who works full time, blah blah blah! You are a mom, foremost, as well as a human being and if something can be done to help you, you deserve to get that help, and not feel guilty about it! Having had this disease a long time now, believe me when I say it affects everyone in your household and so any way that the symptoms can be minimized is a good thing---for EVERYONE!

I'm happy that I could help.

Abby keep us posted. Sorta fits my situation and would love to know how this works for you.
Mike

Abby, There's another option to consider, if you don't mind needles. Hizentra is the subcutaneous version of IVIG. They can train you on how to use it and then you could do an extra dosing in the comfort of your own home. It doesn't have as many side effects either.

http://www.hizentra.com/consumer/default.aspx

I haven't used IVIG (can't) but know others who have. I'm glad your neuro is open to something that isn't an "alogrithm." Treatment is different for everyone and depends upon your activity levels too.

I hope that extra dose helps you out.

Annie