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Just a quick update. I went to daycare for my first visit in3 weeks for IV copper. My CBC was completely normal. Copper level won't be back until Friday, but I don't have to go back again for 4 weeks when I'm booked for daily copper for a week with another venesection as well.
Things are going really well for the first time in years. Now I need to concentrate on strengthening my bones and joints. I've just broken my second toe in 4 months and the orthopedic surgeon says I'm not a suitable candidate for keyhole hip surgery so I suppose open more major surgery is in store for me at some stage in the future so I have to try to improve my overall condition.
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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