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Hi! You're getting good advise here. I agree you need a 2nd and even a 3rd evaluation at sophisticated centers. Whie I don't know a heck of a lot about MDS I can tell you was was misdiagnosed with MDS. Also no cytocgenetic abnormalties. It was baesed on initial hyperplasia, dysplasia and macro RBCs' That hem still thought was MDS after went hypoplastic. Other dxs were ITP and AA vs MDS. Had 2 recommendations for quick BMT-without a Dx. Shocking. Fed up went to the NIH, PNH/AA dx same day.
My regret is I went with Prednisone rather than ATG/cyclo. Now older and may be less effective. Very pleased did not go BMT route but was 45 at dx.
One thing I learned at an AAMDS Conference, as of a few yrs ago, AA and hypoplastic MDS can be difficult to distinguish. But the NIH did it in 1998 so you will get your answer too before long.
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AA/PNH Dx 1998, Warfarin, Soliris
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