Hi,

Patience is the word with this illness.

It takes time to know if something is helping or making your worse or not doing much at all.

In fact, I have learned with time that slow and gradual improvements are much better and more stable then dramatic responses.

In took me more then 3 months to understand that my gut feeling that steroids are making me much worse is correct (and not what my neurologist at that time said).

I had a dramatic improvement every time I had plasmapheresis, that was clear and obvious even with all the fluctuations, but also a very dramatic crash within a week!

It took me six months to be sure that the significant (but not dramatic improvement) I had with Albuterol was real. It only led to about 20% improvement in my condition, but it was fairly stable and predictable (unlike any other treatment I received till then, including mestinon).

My current neurologist (who shares my opinion that in this illness slow and steady is the way to go) suggested I also add ephedrine. This led to another 5% improvement. again not dramatic but real.

So, bottom line if IVIG is not causing you any significant side-effects, just let it do what it does. don't expect to know right away. it may take a few months before you are sure if it's doing something, or it is just the ups and down of this illness, combined with some bed-rest in the hospital.

I think your concerns that this may not be autoimmune are justified, but I would not peruse them at this point, if I were you. From my experience, it really annoys neurologists when you raise such concerns (don't ask me why).

Hope some of this helps and that you feel better soon, and don't have to stay too long in the hospital.

alice