I Have Myelofibrosis

A Myelofibrosis anonymous support group with information on diagnosis, treatment, symptoms, along with personal stories and experiences with Myelofibrosis. You're not alone. 12 People

    Blood Count Change After 26 Years

    After 26 years of no change in myelofibrosis, white counts become 4 times average counts, red counts go down and platlets and bands go down. After tons of testing, nothing is making sense to doctors. My frustration level is very high right now. I'm still waiting for 2 more...
    Kokomo3785 Kokomo3785
    51-55, F
    1 Response Oct 4, 2012

    Living With Myelofibrosis And Facing Grave Financial Issues!

    Back in 2005 I went to a local clinic with an extremely painful blueish color baby toe.The past month prior to this I lost 45lbs and was not on any kind of diet so I was concerned.After the xrays and bloodtest 2 days later I was told I need to see an oncologist , and I did so a...
    macem69 macem69
    46-50
    1 Response Jul 6, 2012

    Myelofibrosis Patient

    Hi, I just joined. 26 years ago I was diagnosed with myelofibrosis. I was watched by my doctor for all these years with no change. I have an enlarged spleen and dry bone marrow. The doctor I spent all of these years with left to go into research. I was given a new doctor...
    Kokomo3785 Kokomo3785
    51-55, F
    1 Response Oct 4, 2012

    My Story So Far.

    I was diagnosed with Myelofibrosis 4 months ago. Two years ago I had a bone marrow test done and at that time I was diagnosed with Essential Thrombocytosis. I was put on anelegrelide to bring down my platelet count which was close to 1 million. They came down to normal range...
    larose11 larose11
    66-70, F
    Mar 21, 2012

    How's The Stress In Your Life?

    What else can it be? No one seems to know the causes of our disease, MF. My parents and grand-parents lived into their 90's and there was not a blood disease to be seen in my very large family -- no lelukemia, no anemia, no cancer. I have had perfect health my entire life...
    cheriedee cheriedee
    66-70
    Sep 1, 2012

    I am a 46 yr young female

    who was diagnosed initially with ET during a random blood test - platelets 1mill ++ then with MF a few weeks later through a bone marrow biopsy. I took Hydrea for about 2 years but only lowered platelets into the 600,000 range. Made me so tired and yucky that I chose to stop...
    jamieh3 jamieh3
    46-50, F
    Jul 22, 2014

    Rob

    On the 24th of may 2012 was the day my world was turned upside down. .My journey on this road began just over 7 months ago aged just 27. It was Just like any other day went to my doctor for a check up everything looked all good. My doctor also decided to sent me off for a blood...
    robz123 robz123
    26-30, M
    1 Response Jan 2, 2013

    Diagnosed, about a year

    and a half ago, right when i turned from 24 to 25. Been rough for me as i am autistic , asperger syndrom to be exact. 7 months in remission. currently live in Arizona
    pas0830 pas0830
    26-30, M
    Jan 10, 2014
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