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Hi Trialad,
I am really sorry that you both have to go through all this. I am a big believer in the 2nd/3rd/4th/etc opinion, especially if you have an atypical presentation of a rare disease. If you don't mind hopping on a plane, I would recommend visiting Dr. Paquette at UCLA. He is "the man" for Aplastic Anemia. He is also very responsive to email (which you could always do first to see if it makes sense to go for the consult).
Hang in there!
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55 yo female, dx 9/08, AA/hypo-MDS, subclinical PNH, ATG/CsA 12/08, partial response. small trisomy 6 clone, low-dose cyclosporine dependent
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