It is a mystery esp bc my hand/arm weakness happens 95% during the night time. It is hard to explain how hand weakness can wake one up but it does. I cant grip anything. It is like a temp paralysis.

I remember in grad sch learning about day time immune function vs night time but I have since been unable to find any literature on that. There must be a major hormonal shift that is responsible for this funny business.

BNY, did they ever test you for myositis? I am retrying the IVIG w solumedrol this time.

Annie, the rest of me feels fine (as in my reg sickness but no other big changes ).

Thx guys

They have checked CPK/ck, adolase levels on me which are always stone cold normal if not below normal.. my needle EMG is always negative too.. so they don't think it's myositis, they dont' think a muscle biopsy is indicated at this time.. though I personally think I should have one! MY ANA is always elevated, and was most elevated right before I crashed and got IVIG..
I don't know why everyone seems so against muscle biopsies... yes it's a bit more invasive than other things.. but shoot -IVIG isn't exactly not invasive either! We are alwasy on the fence about starting an immunosuppresant with my IVIG... I tried steriods once, but started at 60mg (they didn't advise me to taper up, like I have learned here is important).. so it made things worse.. GOOD LUCK!

Thx Bny! I'm so IVIG is working for u. U are my inspiration to retry it. Have a great morning, afternoon, eve