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Hey Cheryl,
I think Triumph is asking whether you should find a bona fide AA expert -- someone who has devoted their practice and research primarily to AA. AA and MDS are both so relatively rare that many folks find it useful to have a consult with one of the leading experts in the field -- particularly if there seems to be some disagreement amongst the docs they are already consulting.
There are a MDS Centers of Excellence, but I'm not sure if there's something similar for AA. The National Institutes of Health in Maryland has some noted AA experts, and a consult there would only cost you for the travel and lodging, if you could obtain an appointment.
It could be that the folks at Barnes are in fact just such experts, in which case you may not need to see anyone else. Has the specialist that you saw at Barnes published on AA or was their an indication that he/she was particularly interested in AA? Transplanters are sometimes more experts in transplant than in any particular bone marrow failure disorder.
Take care!
Greg
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Greg, 59, dx MDS RCMD Int-1 03/10, 8+ & Dup1(q21q31). NIH Campath 11/2010. Non-responder. Tiny telomeres. TERT mutation. Danazol at NIH 12/11. TX independent 7/12. Pancreatitis 4/15. 15% blasts 4/16. DX RAEB-2. Beginning Vidaza to prep for MUD STC. Check out my blog at www.greghankins.com
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