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#1
Fri Sep 16, 2011, 09:21 PM
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severe bone pain!
hello, I was wondering if anyone has heard of sufferers of MDS /(leukemia) having severe bone pain?
thankyou.
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layla, daughter of Zaree 74, diagnosed MDS on Aug2011,currently on Talidex100mg and Transfusion. It is not working! 
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#2
Sat Sep 17, 2011, 12:26 AM
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I have experienced it twice since I was diagnosed in July 2010. The first time I had a systemic fungal infection that resulted in pneumonia, the second time was probably the result of long-term high-dose steroid use (prednisone) from which I was later diagnosed with avascular necrosis. The fungal infection leading to pneumonia hurt everywhere and was accompanied by severe muscle weakness, the avascular necrosis was focused on the hips, knees, and feet.
MDS does put a lot of strain on the body, but I would certainly run this by the doctor and have a full review of your mother's health as a cautionary measure.
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MDS RCMD w/grade 2-3 fibrosis. Allo-MUD Feb 26, 2014. Relapsed August 2014. Free and clear of MDS since November 2014 after treatment with Vidaza and Rituxan. Experiencing autoimmune attack on CNS thought to be GVHD, some gut, skin and ocular cGVHD. Neuropathy over 80% of body.
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