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Hi Marlene,
The haematologist and I originally decided to do venesections instead of Exjade but a doctor specialising in iron overload said that it would deplete my copper as well and recommended the Exjade instead as it's supposed to be copper sparing. Hence my couple of weeks of gastro misery. Maybe I can start Exjade again but at a lower dose but I'd rather not. I really don't want to risk that ? pancreatitis/abdo pain and dehydration I had before.
Regards
PS I just got my first injury from my neuro problem. Because I don't always know where my feet are, I walked into the leg of a lounge chair and I've broken a toe. Unfortunately I still feel pain, it just takes longer for the impulse to reach my brain so it was a good 20 to 30 seconds after the injury that I felt it, by then it's too late to minimise the damage.
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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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