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Sheryl, have they said what is causing the difficulty in making a diagnosis?
My husband was diagnosed SAA as soon as they got the results of the first BMB, and started ATG immediately thereafter. A subsequent BMB showed a chromosomal mutation, however, so the diagnosis was changed to hypocellular MDS. His doctor said that those two can be among the most difficult to tell apart. Normally MDS would manifest as a packed marrow and AA as an empty one, but if there is some dysplasia (malformed cells) or abnormal chromosomes along with an empty marrow, it doesn't really fall neatly into either category. Are they saying that is the case with your grandson?
Most MDS is HYPERcellular, and ATG is generally not considered very effective in most cases, but it has a better track record with the HYPOcellular variety. My husband has responded fairly well to it, so we still tend to think of his condition as AA.
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-Lisa, husband Ken age 60 dx SAA 7/04, dx hypo MDS 1/06 w/finding of trisomy 8; 2 ATGs, partial remission, still using cyclosporine
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