Thread: Possible AA
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Old Tue Oct 10, 2017, 04:16 PM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi lab0919,

It is good that you are being referred for a second opinion. Don't be afraid to ask the new doctor how many cases of AA they have successfully treated. You really want to be seen by an expert in this disease for diagnosis and treatment.

Were you B12 and folic acid deficient?

If you do have AA, it is really important to start treatment ASAP to ensure the best outcome, especially since you are so transfusion dependent. Oct 23rd just seems like a long time away...

Can you call the new hospital to express the urgency? Have you considered scheduling a free appointment with NIH in parallel? Is your insurance limiting you to that one hospital?

Wishing you the best of luck in seeing someone quickly! Be assertive!
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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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