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I looked up my gene deletion and I wasn't able to find any link between the deletion and MDS but it was mentioned as having a link with some form of Leukaemia (can't remember if it was AML or not).
This is a moot point at this stage anyway because my haematologist has told me that I probably don't have MDS. However, numerous letters written to my GP by him says I have MDS....my medical chart says I have MDS.....my last 5 BMBs say I have MDS.....the Cancer Registry with the Federal Government says I have MDS....my neurologist says I have MDS etc, etc.
I did think that I had been misdiagnosed with MDS and I did have copper deficiency the whole time but I am now overloaded with copper and my counts are dropping so I'm becoming concerned that the diagnosis may change again.
I'm at a point where it really doesn't matter what it's called as long as I feel okay.
Bone marrow diseases seem to be a diagnostic nightmare.
Regards
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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