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In limbo

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This topic contains 3 replies, has 4 voices, and was last updated by  Kathy Lynch 4 months, 4 weeks ago.

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    Marie Reardon

    Hi Everyone,

    I hate to bother everyone but I am looking for insight and a better understanding of MDS and what led you to that diagnosis.

    I am 41 year old female. I started having systems in August 2018.

    Very light headed (going to pass out but never did)
    Pressure in my head
    Numbness in both hands and feet
    I am always very tired and week feeling

    Currently I am diagnosed with CCUS Clonal Cytopenia of undetermined Significance that my Dr says could lead to mds or Leukemia or it may never lead to anything.

    I have low neutrophils which run from .2 to .7. Also sick with a cold nothing serious so far.

    I have a mutation TP53

    My bone marrow biopsy turn result we positive. They will keep checking every few months for any changes.

    Does anyone else have a similar background.

    Thank you




    I am 66 and was dx with MDS in June 2016. My sole cytopenia is neutropenia. WBC is generally between 1.5 to 2.5. ANC is almost always in severe neutropenic range .5 or less. I do get some skin infections but none so serious to require treatment. I had had two colds in the past 2 yrs and 8 months. They both knocked me for a loop and took 2 to 3 weeks of recovery. I am on watch and wait and have annual bmb’s which so far indicate no progression of mds. Monthly peripheral blood work has been stable with low wbc and neuts consistently. I wash my hands often, stay away from sick folks and try my best to avoid infection. So far so good. My mutations are IDH1, SRFS2 and ASXL1.

    Best wishes


    Allan Romriell

    Like Michael I am 66 and was diagnosed with MDS in June 2016 but mine is MDS-RS and my biggest problem is low Red Blood cells and low Hemoglobin. My white counts have only been low once or twice and only slightly, but reds are always low, and platelets are low normal to below normal but never below 75000. So I also am on watch and wait and so far have been fairly stable, actually in Oct I had the best overall numbers since diagnosis, so hopefully it will progress slowly. I wish you both the best. It is a little scary if you dwell on it to much, I try to stay positive and do what I can to stay healthy as possible.
    Good Luck to you


    Kathy Lynch

    Hi All, The “limbo” stage can be frustrating….but keep in mind that usually means you have not progressed into full blown MDS…and there is a small percentage that don’t or don’t for years….so it can also be a good thing. Hugs another fellow “Limbo” mate

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