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I received a phone call this afternoon. The treatment planned for Monday has been cancelled....they couldn't get the Copper but they are hoping to get it on Monday for treatment on Tuesday. I'll just have to wait and see.
I think I've decided to find a neurologist who is willing to be involved in my long term care. I feel that my neuro condition is very slowly deteriorating and it would be good to have someone to monitor any changes. Perhaps this will satisfy the hematologists concerns about the underlying syndrome.
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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