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Old Fri Jul 2, 2010, 07:44 PM
m mindas m mindas is offline
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Join Date: Jan 2010
Location: Toms River, New Jersey
Posts: 18
Hi, David.
I thought I would share my story with you as I am currently without a sound diagnosis as well. I was initially diagnosed with low grade MDS at a local hospital, then switched to AA at a cancer center due to low cellularity. I was treated with ATG (horse) and cyclosporine. It hasn't worked and it has been 4 an a half months and all of my counts continue to be low-WBC 1.9, Hemoglobin-9 (varies)and platelets will drop to below 10 without transfusions. I also have a PNH clone size of 39% and have been taking Soliris since May. I went to see another specialist in New York's Sloan Kettering Memorial Hospital and he said that there are no chromosomal abnormalities or overt dysplasia to clinch the MDS diagnosis and it is not AA because I am no longer hypocellular. My diagnosis is "Acquired Bone Marrow Failure". They feel that there is a lot of "overlap issues" with AA & MDS and it really doesn't matter what you call it--we are just not making blood cells and our marrow is not working. I am soon to be scheduled for a bone marrow/stem cell transplant in the upcoming months from an unrelated donor. I have found peace with this plan because I want a cure and am tired of transfusions. I hope you get the answers you seek and your counts rise as mysteriously as they went down. Just thought you would like to know that you aren't the only one in the world with this diagnosis issue.
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Marian , Dx 12/25/09 w/ hypoplastic myelodysplasia and 10% PNH clone. Dx changed to SAA in 1/10, treated w/ unsuccessful horse ATG and cyclosporine. Dx of unclassified MDS or acquired bone marrow failure, PNH clone 39% (after ATG). Due for BMT in Sept or Oct 2010.
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