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49 yr. old – Diagnosed last year

Home forums Patient Message Board 49 yr. old – Diagnosed last year

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    Sherri Lani

    I am thankful to see this support group and know I’m not alone. I was diagnosed with MDS last year, and like all other posts, was caught in a whirlwind of confusion. I do lab work every 3 months to watch my blood counts, and to date, have maintained consistent results. I recently had my EPO checked and it was shockingly high (65 mlU/ml), is this normal given the condition? I consider myself to be very healthy – eating right, exercising, and positive attitude. Am hoping to hear from other members about their journey and any insight. Thank you and stay strong!

    Site Admin

    Hi Sherri, Thank you for posting. Your increased EPO level may be due to the overproduction of red blood cells that occurs in response to an event such as low blood oxygen level. Have you ever received a second opinion from one of our MDS Centers of Excellence? It would be best to seek the advice of an MDS expert so that you can get answers to what may be an underlying cause for your elevated level.

    • This reply was modified 4 years, 1 month ago by Site Admin.
    • This reply was modified 4 years, 1 month ago by Site Admin.
    • This reply was modified 4 years, 1 month ago by Site Admin.
    Timothy Todaro

    Do I have MDS?

    My Mother died of MDS, (and other complications) but that was what was on the death certificate at age 78. I am wondering if I have MDS; aware that it is not hereditary but read it could be. Symptoms I have are: Former Smoker, had Radiation treatment after Radical Prostectamy last year. Bruise/bleed very easy. Last blood work was in February 2016; WBC 3.9, RBC 4.4, Hemoglobin 13.5, Hematocrit-Whole Blood 39.7, Platelet count 126, and Lymphocyte 17. I have an upcoming appointment with my GP and am having blood work done again. If similar results should I ask to see a Hematologist or am I being a Hypochondriac? Any help/comments/opinions would be appreciated.
    Tim Todaro
    Vilano Beach Florida

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