I also have the problem of slow steady weight/muscle loss. My doctors are not sure why and don't think it has to do with the disease. However, I use to be able to gain weight like a normal person! Please let me know if you learn of anything. I've been told to load up on calories and to make sure it includes meat.
52 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. Tried slow cyclosporine taper over 4+ years. Platelets fell, so back on cyclosporine. Trisomy 6 clone in 5% of cells.