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MDS bone and muscle pain

Home forums Patient Message Board MDS bone and muscle pain

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  • #50562
    Marcy Bohannon
    Participant

    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.

    #50565
    Site Admin
    Moderator

    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 https://www.mds-foundation.org/mds-centeres-of-excellence/, 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 patientliaison@mds-foundation.org. In the meantime, you can also view this video https://www.mds-foundation.org/bboh/. I hope this information helps.

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