Hello! How have you been doing? Did they find any answers?? I am still doing ivig every 3 weeks and it is keeping me afloat, though my atrophy is slowly getting worse, though very slowly verses when it all started and I got it so suddenly... I never feel normal, though i will have periods where I am doing better, and then will have exacerbations which can be a little scary.. I wonder if it is some sort of vasculitis sometimes.. who knows! Hope your doing ok!