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Copper is now down to 2.1 ceruloplasmin .06
The only effects so far are platelets down to 100 and total white cell count to 2.5 (both had been in normal or nearly normal range). I have also developed new parasthesia in my left arm. Oddly enough my ferritin has gone up 300 in the 2 months since I haven't had a transfusion. I have no idea what would cause that, I thought it should start falling.
Catherine, has Bruce got his results yet? How's his copper level going? Can't help myself, I may have refused treatment but I can't stop visiting this site, I like to see how everyone is doing.
Wish you all the best.
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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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