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MDS/MPN Unclassified

HomeForumsPatient Message BoardMDS/MPN Unclassified

This topic contains 5 replies, has 4 voices, and was last updated by  Diane Tatterton 2 months, 2 weeks ago.

Viewing 6 posts - 1 through 6 (of 6 total)
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  • #34727

    Tracey BROWN

    Hi, I am newly diagnosed with MDS/MPN U. I was wondering if there
    is anyone else with with this disorder.
    It is difficult to find any information in regards to outcome and what to
    expect along this journey.
    I do not know of any other people with this particular Bone Marrow Disorder.
    There is no support groups for this overlap disease and I feel like I am
    on my own. Even my GP is learning as we go along.


    debbie stern

    Hi Tracey,
    I also was diagnosed with MDS/MPN U in Febrary. I would be happy to talk to you. Please write me at and tell me more and we can share more. Who is your oncologist that diagnosed you and where is he/she? There are MDS and CMML FB groups and really you could fit in either, but I also don’t personally know anyone else with this specific category of MDS, and would love to know how many are out there and what they have been told. Please write me. Debbie


    Kathleen Kearns

    Hi Tracey,
    I have an MDS/MPN U, RARS T. I have elevated platelets and low red blood cells. It is tricky, trying to balance the two disorders that contradict each other. What exactly have you been diagnosed with? Where do you live?


    Tracey BROWN

    Hi Kathy,
    I live in Australia.
    So far I have been told it is MDS/MPN U. I do not seem to have any mutations, which seems to be unusual. I have very low Platelets, RCC and WCC, with myeloblasts in the peripheral blood, which as you mentioned contradicts each of the disorders. After messaging with Debbie, I know I need to find out more about my own diagnosis. I see my specialist in a couple of months for review and I will have a list of questions for him.
    Thank you for replying to my post.


    debbie stern

    Hi guys, So I was diagnosed with MDS/MPN U after being diagnosed somewhere else with multilineage myelodysplasia. I am not sure which it is. Will get a third opinion this month. I was told it is MDS/MPN U because my Anemia is Normocytic. I was told that it is usually Macrocytic if it is regular MDS….I am not even sure all Hematologists would agree with that, as the first one said Multilineage Myelodysplasia. I will let you know after I get a third opinion. I have Hgb of 10.7, mildly low Hematocrit and platelets and RBCs, and low normal white blood cells. I am watch and wait. Debbie


    Diane Tatterton

    My 75 year old father was diagnosed with MDS/MPN with secondary myelofibrosis in Feb 2017. Symptoms developed very rapidly late Nov/early Dec and he is now dependent on weekly red blood cell transfusions. We are based in the North East of England and he is currently being treated at our local hospital. Dad started hydroxycarbamide mid Dec and has just started Ruxolitinib this week. Main symptom (although there are many) is severe fatigue. This is such a rare disease we are keen to hear from any other overlap patients willing to share their experiences and advice.

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