Thread: mds
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Old Thu Mar 13, 2008, 09:15 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
just noticed a trend

Hi, My doctor isn't concerned about my temps either. He just kind of nodded and acted like it was to be expected. I only found out that I was getting these temperatures because I'm admitted to hospital every 5 weeks for a night or two and when the nurses take my temperature it was always above normal in the evenings. When I realised there was a trend there I took my temperature at home twice a day for two weeks and sure enough, it went up every evening. When I first became ill I lost over 40 kgs and was cold all the time. I have since regained 20 kgs and I don't feel cold very much at all. If your husband wants to gain some weight, I can really recommend going to see a dietition. The dietetics department at the hospital I attend was wonderful. They worked with my likes and dislikes and arranged for me to get nutritional supplements through the hospital at minimal cost. After having been overweight most of my life, I didn't realise that you have to work hard at putting weight on too. It takes commitment to eat healthily when you don't feel like eating at all. Best of luck to you and your husband. 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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