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MDS bone and muscle pain

Home Demo forums Patient Message Board MDS bone and muscle pain

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    Marcy Bohannon

    I have been receiving Vidaza for 5 months and have multipie complications of the MDS: blood clot in right lung, hypernephrosis of left kidney, enlarged ureter, now taking Xeralto blood thinner, right side sternum and rib pain, and yesterday started having bone and muscle pain in my arms, legs, and feet. Walking very slowly. It is all I can do to keep myself from getting depressed with all of these new complications. The one advantage is that I have only had one transfusion since December and that is the goal as my iron is very high also and may have to be treated soon.

    Site Admin

    Dear Marcy, I know this is a difficult situation for you. Bone pain is a symptom that many patients experience with MDS. This can be due to lack of oxygen to the muscles, an immune component to MDS much like arthritis. However, good to hear that your transfusion burden has lessened.

    Following is a link to our Centers of Excellence worldwide, if you are interested in seeking a second opinion. We also have a wonderful information program called the Building Blocks of Hope which we can send you via postal mail. If this is something that you would be interested in, please forward your mailing address to In the meantime, you can also view this video I hope this information helps.

    Juan Valero

    Please do some research on IP6 with INOSITOL it really help with the body pains…also it is an anticoagulant and it helps to control the excess of iron in the body … for me it has been a big life stile changer..

    John iosiphakis

    My Muscle Pain gets worse when I go to bed at night . All muscles very stiff. Tummy muscles and shoulders , and hips.
    Another peculiar feeling is stiffness at the bottom of my feet on my soles.
    Any recommendations Please? My DR gave me Lyrica tablets , not helping though

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