Hi, I understand you didn't ask your doctor about the extra abnormality and what it means regards your prognosis,
That' s exactly the kind of thing that I do. I think of questions afterwards and then I forget to ask next time, I get so cranky with myself sometimes, I think the anaemia must effect my brain.
I had that platelet clumping problem once. At least the lab picked up that the platelets had clumped. I had never had a platelet problem then one day in day care I was told my platelets were very low and that I needed a platelet transfusion and repeat urgent bone marrow biopsy. As this meant that all 3 cell lines were now critically low, I was very worried. I asked for the blood test to be repeated and the results came back with normal platelets. It turns out they had clumped on the previous test and the results were totally wrong.
I was very relieved and cranky at the same time. It made me realise that because the doctor wasn't surprised it's something he expects to happen at some stage. If or when it does happen for real I'll be more prepared mentally.
I hope your repeat test is good.
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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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