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49 yr. old – Diagnosed last year

Tagged: EPO, MDS, young diagnosis

This topic has 2 replies, 3 voices, and was last updated 7 years, 8 months ago by Timothy Todaro.

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July 27, 2016 at 10:37 am #30246

Sherri Lani
Participant

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!

August 4, 2016 at 3:24 pm #30337
Anonymous
Inactive
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.
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August 16, 2016 at 12:45 pm #30382

Timothy Todaro
Participant

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.
Thanks,
Tim Todaro
Vilano Beach Florida
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