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Old Sun Jul 3, 2016, 11:44 AM
Hopeful Hopeful is offline
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Join Date: Jan 2009
Location: California, USA
Posts: 766
Hi NMRunner,

You may want to give the kind nurses (Olga and Barbara) at NIH in Maryland a call. They may be interested in seeing you as you have an expanding PNH clone and 13q deletion. The consultation is free and could provide you with valuable insight into what is going on. You may be able to get an appointment there faster than back home

Are you seeing a GI doctor locally? For the GI issues, another possibility is pancreatic insufficiency. I had pain in upper left quadrant under my ribs as a symptom.

Good luck and congratulations on the recovering counts!
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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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