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Hi, I have this problem too but it only started after I had Vidaza. The only treatment I'm having at the moment is copper infusions. 24hr urinary protein showed high excretion but we are not investigating or doing anything else at this stage.
Regards
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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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