@Gingergrrl
The disease I am being treated for is this one, necrotizing autoimmune myopathy.
http://www.ncbi.nlm.nih.gov/pubmed/21885975
I tested negative for the two antibodies tests developed so far but half the cases reported test negative.
This disease is so new that the antibody tests only came out the past year or so.
Basically this is an autoimmune disease but does not show the inflammation usually seen.
I have high blood CPK numbers, muscle biopsy showed necrosis and atrophy but I do not have inflammation of the body.
I am currently taking 35g of Grifols Flebogamma 5% per day for 3 days, every 4 weeks.
The first 3 months it was for 5 days but my neuro lowered it to 3.
Improvement was slow but steady, I thought I could stop supplements but I have found that the muscle/mitochondria supplements have helped the rate of improvement.
I take B2, coq10 and L-carnitine along with the methylation supplements B12 and folate.
B2 is used as treatment for several mito/genetic diseases that are listed as "riboflavin responsive",
It has helped tremendously since I ramped up to high dosing of B2, I assume I have something causitive similar to those diseases.