Hi Birgitta,
My doc was talking about viral infections mainly. He said that the zoster (shingles) test was negative and some other tests were negative too but I didn't recognise their names and so they haven't stuck in my brain. He also said that I could have hydrocephalus but that he didn't do a pressure test. I don't get headaches very often so I don't think I have increased pressure. He did say that if it's an immune process then the transplant can go ahead because auto immune disease can be cured by the transplant as well but the diagnosis of the CNS problem has got to be definite before the BMT can go ahead.
He did say that he had spoken to the transplant co ordinator and had asked them to speed up the process of looking for a donor, so that's given me some optimism. I have an appointment to see the neuro doc next Wednesday and I'm hoping for some answers then.
Day 5 of cycle 5 of Vidaza today followed by a transfusion. One of my work colleagues is going to join me in daycare today for coffee so that'll be really nice and make the time go quicker. They serve coffee and cake in daycare for morning and afternoon tea and the cake is always very nice. The sandwiches they serve for lunch aren't so nice though, always the same thing chicken or corn beef or egg. Still it's nice that they provide any lunch at all.
We are supposed to have lovely fine weather with 25 degree days on the weekend so I'd like to take a drive to the country to enjoy it.
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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