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Old Tue Aug 27, 2013, 07:13 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi, I also had white cell problems long before any other cell lines. I too, only found out I had a problem when I got pneumonia and my white cell count was very low.

After a year or so I also developed anaemia requiring transfusions. My diagnosis at that time was cyclical neutropenia with iron deficiency anaemia. I had a number of BMBs some of which showed no iron stores and some of which showed normal iron stores. I kept being told that my MCV was high and that wasn't in keeping with iron deficiency and that they suspected MDS.

It was nt until 7 years later that my BMB finally showed unequivocal MDS. Because I required blood transfusions every two weeks, I was started on Vidaza but the MDS progressed and the blast count increased and for the first time my platelets were also effected. I started being worked up for BMT.

Fortunately (???) , I developed a neurological problem, more investigations were done and I was found to have copper deficiency. Once this deficiency was corrected the MDS went away. Whenever my copper level drops the MDS returns.

Regards

Chirley
__________________
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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