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Hi Birgitta, they don't think that the copper leaking into the tissue caused the allergic reaction but just a coincidence. I have developed a red, sore swollen area where the copper leaked just like when I was giving myself injections of copper in my stomach but I'm not concerned, I'm sure it'll get better.
I have also been given a copy of a letter written by the Prof of Metabolic Medicine I used to go to which he wrote to my haematologist. This letter states that he was of the opinion that the chromosome deletion that I have has caused the copper transport problem and not the other way around. He admits that this is just his opinion because it is so rare that it is impossible to be certain.
I know this is a really naive question and I am displaying my ignorance but, if BMTs can fix chromosomal abnormalities, why don't they transplant children with life threatening diseases because of chromosome abnormalities? Diseases like Angelmans etc.
I discussed my concerns about not being able to have more copper with a haematologist (he was covering the regular doctor who was on leave), I explained that the ensuing bone marrow failure didn't concern me as much as the neurological deterioration. I admit that I'm very frightened of increasing loss of function, becoming bed ridden and developing dementia, not to mention the neuropathic pain which is really hard to treat
I have to wait two weeks before I will find out if I can continue the copper treatments or not. It's going to be a long, stressful two weeks, perhaps I need to make an appointment with my GP so I can talk to someone objective. I can't discuss this with my family, I feel I have to protect them from worries, they have enough of their own.
If you didn't have bad times in your life, you wouldn't appreciate the good bits.
I have a new member of the family from the Council Animal Rescue.....Baby Boots (already named by the Council). She already has my dog and old cat under her spell....she's really funny and energetic.
Regards
Chirley
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