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Old Tue Dec 15, 2009, 11:31 PM
Chirley Chirley is offline
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Join Date: Oct 2007
Location: Logan City Australia
Posts: 1,100
Hi, that was one of my first symptoms. When I first became ill in 2003 I lost 42 kilos (?90lbs) in about 6 months. I even had to be admitted to hospital just for the weight loss.

I was put on dietary supplements and on discharge from hospital I had to attend a dietition every week. It worked very well and I have managed to regain about 25 kilos.

I found that when I was very very thin that I coped with the anaemia better, I think it was because I didn't have a lot of weight to carry around but overall I feel a lot better with the weight back on and I don't get all those comments on my health any more.

Oddly enough, the weight loss didn't worry me any where near as much as it worried my doctor.

I find that now I can enjoy eating chocolate and nuts and ice cream and not think about how fattening it is.

I don't know what turned my weight loss around, I think it was probably a combination of the supplements, dietition input and a stabilisation of my illness. I also decided that even if I wasn't feeling very well and wasn't hungry that I would make myself eat anyway.

I hope you find what works for you. It was scary for me to be admitted to the palliative care ward and be labelled as cachectic. I hadn't realised until that happened that I was considered to be close to death. Apparently dramatic weight loss in itself is very dangerous to your health without the added problem of bone marrow failure as well.

Please talk to your doctor or dietition to find a solution that works for you.

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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