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Old Thu Jul 19, 2012, 04:53 AM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi, I'm not as educated in this area as a lot of others here. The BMB doesn't sound particularly worrying.

Have you had all your nutritional studies done? Things like B12/ folate, iron studies zinc, copper etc. Perhaps you need a gastroscopy/colonoscopy as well, these are tests that every one should have at some stage anyway.

I'm not trying to second guess your doctor and I'm sure that any competent hematologist will ask for a heap of tests to try and establish a diagnosis.

In the meantime, when you first start having medical issues it's a wrrying time but after a while, you realize that your not going to drop dead as soon as you get a bad diagnosis. You are exactly the same person 5 minutes before being told a diagnosis as 5 minutes after. It seems as if a vast majority of bone marrow problems either have effective long term treatments or take quite some time until they impact you negatively.

Best of luck, hope you get some answers soon.

Chirley
__________________
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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