Does anyone have MYELOFIBROSIS?

Discussion in 'Fibromyalgia Main Forum' started by shep, Nov 14, 2006.

  1. shep

    shep New Member

    I have been told that I may have myelofibrosis.
    The symptoms are anemia, chronic fatigue, swollen abdomen, enlarged liver and spleen. This I am told is a rare blood disorder, cause unknown.. Any info appreciated.

  2. kimkane

    kimkane New Member

    I have never heard of this. But caught my eye because I just had my yearly check up and my liver numbers are very high. It is also enlarged, along with my spleen and pancreas. I will mention this to my DR.

    Good luck to you, Kim
  3. blueski31717

    blueski31717 New Member

    I do not have it but is kinda on the line of my daughter. I had heard of it they thought my daughter had it.

    Myelofibrosis is a progressive disorder in which bone marrow is replaced with scar tissue, leading to severe anemia. In addition, it may cause enlargement of the spleen and liver. Doctors may also refer to it as agnogenic myeloid metaplasia or idiopathic myelofibrosis. The cause isn't known.

    Myelofibrosis is a type of chronic leukemia that occurs primarily in people older than age 50. About 10 percent to 15 percent of people with this disorder eventually develop acute leukemia. Myelofibrosis develops slowly. Signs and symptoms may include:

    Enlarged spleen
    Enlarged liver
    Easy bleeding
    Night sweats
    Bone pain
    Pale skin (pallor)
    Shortness of breath with activity
    Easy bruising
    A doctor may confirm a diagnosis of myelofibrosis by:

    Blood tests
    Bone marrow biopsy
    There's no cure for this disorder. However, allogeneic stem cell transplants may potentially cure a small number of people with myelofibrosis. The life expectancy for people diagnosed with this disorder varies, from several months to more than 10 years.

    Treatment is usually directed at managing the signs and symptoms and may include:

    Blood transfusions to correct anemia
    Radiation therapy
    Surgical removal of the spleen (splenectomy)
    Bone marrow transplant
    Erythropoietin to regenerate red blood cells
    Thalidomide with steroids

    I will keep you in my prayers, I understand it is not for sure right? Positive thoughts your way...

  4. shep

    shep New Member

    Blueski, I am sorry about the icon, I clicked the wrong dot!!! Please forgive.
    I am sorry your daughter has this disease; but I am glad you found my post and took the time out of your day to write to me.
    This is the most info. I have gotten so is rare and not a lot know about it seems. My mother got this right before she passed away from congestive heart failure.

    She had fibro and the arthritis that is found to be in the same patients that develop myleofibrosis.

    They found I was anemic last month in doing blood work for a total knee replacement I am having done DEC 5. I dread it, but have put it off so long , I can't do it anymore.
    I would love to get to know you. WE seem to have somethings in common. We have both had hard jobs, ( I worked in a State Mental Facillity for the Mentally Challenged for 18 years. So stressful, lots of walking and lifting (I did direct care..baths, meals, dressing, wiped tears and butts...u know the menu. ;0
    I don't have children, but a Schnauzer whom is so faithful to me. It would take a long post to tell it all now. I am 57, married 33 years...he is 74.....that is a long bitter sweet story.
    I live in East Tennessee, a small town Jonesbough..near the Bristol Racetrack if you are into NASCAR, and we are about a hour or so from Knoxville..GO VOLS and close to Pigeon Fordge and Gatlinburg.
    I have had fibro/ chronic fatigue since the last robs you of your life as you once knew it and in a hurry if you don't get you mind made up (when you can find it) that you are not going to let it put you down and out all the time. We all have days and weeks sometims that we just have to le it all go and rest.
    I have an impossibe time sleeping.
    I am very worried about the knee srugery. I am in enough pain as it is without slicing my leg open. lol I think most of my pain will be from the fibro ...chronic myfascial pain. I am going to have a little talk with the doctor about pain control before I ride in on my white gurney.

    I wish we could exchagne e-mail..but not allowed. I am on Yahoo Messenger listed with this same e-mail addy. If you have it send me an invite to be put on your buddy list.

    If you want to be cmpt friends let me know.
    My motto is " Knees Down (prayer) and Chin UP! (postive attitude)

    Till later,
    Cathy Baines or Odiepain friends call me this as I grunt and grosn so much ,,they say!
    [This Message was Edited on 11/15/2006]

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