So far it seems that the only consensus is that it is autoimmune..the current debate is CNS, muscle or some whole body syndrome or a mix of a few of these.

The neuro at Hopkins wants me to hold off on my regular IVIG b/c she thinks that the low dose I'm getting (0.6mg/kg) is not enough to do anything anyway. My past experiences with skipping doses has not been good---we'll see what happens this time

erinhermes--I'm sorry to hear you are still in the hospital..are you feeling any better?