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Old Fri Apr 4, 2008, 07:00 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Bone marrow failure of unknown cause

Hi, I originally posted in MDS forum but have been thinking I was on the wrong site. I have just come home from a 2 day stint in hospital for my regular transfusion of 5 units. My doctor tells me that my white cell count is a bit low at the moment and to be careful and monitor my temperature. He didn't tell me what the count was but he did add that the neutrophil count was a bit low but it was the lymphocytes that were very low. We had a short talk once again about the ultimate outcome from whatever is wrong with me and he said that he is reasonably certain that I have MDS or something similar !!! and although the transfusions every 5 weeks were keeping me stable that it may be time to start testing for bone marrow transplant. He has mentioned transplant before but I didn't want to know and used to change the subject. I used to go home and wonder if he meant stem cell or bone marrow transplant. I thought stem cell wouldn't be too bad but that bone marrow transplant would be very scary. Well, lucky me, it looks as if would have to be bone marrow transplant. That is all I wanted to know at this time, after all, the choices with me are, baby steps or bury my head in the sand. Procrastination has always worked in the past. Bye. Chirley
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Copper deficiency bone marrow failure (MDS RAEB 1), neuromyelopathy.
FISH reported normal cytogenetics but gene testing showed
Xq 8.21 mutation
Xq19.36 mutation
Xq21.40. mutation
1p36. Mutation
15q11.2 deletion
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