I just received a phone call from the new oncology daycare unit that I have been referred to.
I have an appointment to see the haematologist next Wednesday and they have contacted my old treatment centre to have my medical records released. The old centre said they would contact me and get my permission. This was last week. I haven't heard from them and was unaware they had been contacted.
If my records aren't released I won't be able to have treatment until the new haematologist is satisfied that my diagnosis is correct. (understandably).
I can't believe the old treatment centre is being this obstructive. Perhaps they don't want to be found at fault for administering my copper at the wrong rate.....who knows!
I just want this to GO AWAY.
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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