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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. 17 People

    Katejephson

    I was diagnosed just over a year ago. For the first 10 months, apart from a large spleen, everything was okay. Last October I was admitted to hospital with varices in the oesophagus, one of which was bleeding significantly. That was tied off and I now have regular checks. It has...
    katejephson katejephson 61-65 1 Response Jan 19, 2012

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    Myelofibrosis Experiences

      Hi everyone, I just joined this support group. I was diagnsed with myelofibrosis 28 years ago and at that time the hematology docs decided to just watch my blood counts to see if there were any major changes. There were not, so they told me I had nothing to worry about...
    dcllmasters dcllmasters 66-70 7 Responses Oct 9, 2010

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    Diagnosed 2/27/2012 - One Month Ago!

    I just found out one month ago that I have Myelofibrosis. I am a 41yr old female living in NH. Thankfully I don't live far (just over 1hr) from Mass General Hospital in Boston where my Specialist is. I am getting prepared to get a second opinion... perhaps at the Mayo Clinic...
    albauman albauman 41-45, F 4 Responses Mar 27, 2012

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    Myelofibrosis Patients

    Hi All,My name is Skye Rodriguez and I work for a company called Elliott Benson research and we are hosting a paid focus group paying $150 to all Myelofibrosis patients that maybe interested in sharing their personal experience with us. This will only be an hour of your time and...
    Skye18 Skye18 22-25 1 Response Apr 13, 2012

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    Related Experiences

    To be completely honest, I denied it for some time. I haven't actually done any kind of official test, but I have a nurse practitioner and a number of knowledgeable individuals who...
    Kavka Kavka 18-21, M 15 hrs ago

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    I'm 31 years old and have been battling back problems for the last 15 years. It used to come on just once in awhile, a little pain in the lower back, some tingling down my right...
    jeneral3015 jeneral3015 31-35, F 11 hrs ago

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    I'm 16 years old.There are 10 days till my birthday.I've been depressed for good 3 years.My whole puberty was a great mess.One year and two months ago,I got bulimic.Before that,I...
    mystiquebelle mystiquebelle 13-15, F 8 hrs ago

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    HI , Im 24 years old , im a man . the thing about me is i am not quite sure if i have cauda Equina , i didnt have an accident or any truama , my pain first started at my right foot...
    Atrilundy Atrilundy 22-25, M 1 Response 11 hrs ago

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    *Walks up to counter* “Hi, I would like to order a man, athletic build, cute face- maybe with a little scuff on it;), very kind, charming, and intelligent; and that will be all...
    MW1321 MW1321 18-21, M 2 Responses 16 hrs ago

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    oh the battle with the body has been a living nightmare from hell as you all know so well. I have so many physical problems, I just get that look from the doctors. urggg So I have...
    mommaceitta mommaceitta 51-55, F 8 hrs ago

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    I have yet to see anyone about it or get an official diagnosis, but I think I have paranoid or disorganized schizophrenia. I have been experiencing auditory, visual, and even...
    e524 e524 18-21, F 1 Response 5 hrs ago

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    I really want to experience this since I never have before. I've never had a mutual bond with someone in which we feel strongly for each other. I am jealous of other people who...
    Dreamer32 Dreamer32 22-25, F 3 Responses 4 hrs ago

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    I'm new to EP.. I was told by my close friend that it was a great app that would help me deal with having herpes. Basically I was in a relationship with a guy for over a year...
    cb180696 cb180696 16-17, F 24 mins ago

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    If I had friends! 😫😭 I mean I have friends, socially, but nobody asks to hang out with me or asks me to join them on something, unless its my sister and her friends. Maybe...
    ashalew ashalew 22-25, F 13 hrs ago

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    I suffer awful anxiety attacks since 10 years every day. I also have social anxiety and have had panic attacks outside the house. I was on meds 10 years ago as it all started...
    angel8i angel8i 31-35, F 1 Response 13 hrs ago

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    I Have this collection of ribbons because use them when i have a haircut first week the hair sometimes dosen't look so good or because i must go for a haircut and didn't found time...
    blackweirdcat blackweirdcat 46-50, F 11 hrs ago

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    I'm a teacher who moved to a small town because I was supposed to get married. Didn't happen and now I have nothing and no one in my life. I have no one to call or talk to. I'm...
    srta srta 26-30, F 2 Responses 6 hrs ago

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    I am 13 and I have had pimples since 4th grade, and now I am in 7th grade and it has gotten so bad I don't want to go anywhere. But the worst part is I make it worse for myself...
    fabbeauty fabbeauty 18-21 5 hrs ago

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    I feel like I have no chance of being in a proper relationship... I had a girls night out with some friends last night which was fun, but I found myself feeling like the 'grenade...
    charllymarie charllymarie 18-21, F 4 Responses 4 hrs ago

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    Lots of things in mind these days. Lots of memories, that I didn't have on the surface. I have things to say that I'm not ready to say. I don't even think I'm ready to write them...
    WickedScullyOfTheWest WickedScullyOfTheWest 31-35, F 4 hrs ago

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    I don't understand why men are obsessed with their penis size and why the assume if they have a large penis, they suddenly know how to have sex. And then they have the gall to...
    ErraticallyGrey ErraticallyGrey 22-25, F 5 Responses 2 hrs ago

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    Another incident from when I was 14, one which is burned into my memory in excruciating detail. It happened a few weeks after my naked picture had made the rounds at school, and...
    reader123456789012 reader123456789012 22-25, F 1 Response 2 hrs ago

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    Hi there I have had ADHD for the last 30+ yrs and let me tell you I have had my ups and downs and things can get challenging at time I know I have found something that has worked...
    MrThriving MrThriving 36-40, M 2 hrs ago

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    A lot of people (mainly guys) have said my voice is very soothing. I don't really agree but ehh.
    lexix0 lexix0 16-17, F 6 Responses 17 hrs ago

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    Last night I had a dream that felt good when I was having it but now I am awake I find it disturbing. I was with a crowd of people (in my mind, I seemed to associate them with...
    T4RD15 T4RD15 26-30 15 hrs ago

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    While at uni I was at a party and one of the lecturers was there. She was about 35 and I was 19, and we had a wonderful time at the party, and ended up kissing while we were...
    PinkyPinks PinkyPinks 31-35, F 5 Responses 10 hrs ago

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    "After A While" After a while you learn the subtle difference between holding a hand and chaining a soul and you learn love doesn't mean leaning and company doesn't always mean...
    mommaceitta mommaceitta 51-55, F 8 hrs ago

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    Just today... my mom called me an ungrateful egotist. It hurts a lot when your only purpose is to help others..and when you have helped. She is attacking me as if I was some kind...
    sparkydream sparkydream 16-17, F 1 Response 7 hrs ago

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    getting updates from my challengers.... i LIGHT UP when i read these: "I am half way done with 21 day fix. I am down about 5 pounds and about 25 pounds in 2 1/2 months. It feels...
    felismina felismina 36-40, F 1 Response 5 hrs ago

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    I am at the point in life where I have "disposable income" and I can buy nice stuff. I hate it when I walk into nice stores / specialty shops and I am ignored. I am looking for a...
    Kickingtires Kickingtires 51-55, M 1 Response 5 hrs ago

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    I carry it everywhere, spent 2 years of my life on it -.- made a lot of friends with this ipad so basically I have friends on my finger tips. If u Destroy my ipad, u destroy the...
    LoverBoyMike LoverBoyMike 18-21, M 5 hrs ago

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    I don't think he deserves a letter but I know that writing one will make me feel better so I'm doing this for me. I want to thank you for helping me get over him, but I also want...
    Dreamer32 Dreamer32 22-25, F 4 hrs ago

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    So my boyfriend and I have been together alittle over two years and hes leaving tomorrow for work. We are inseperable and he is my best friend. I have cried all day.knowing I will...
    stephyblueyes14 stephyblueyes14 26-30, F 2 hrs ago

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    All of the women of in my family have ESP. We've always had from the beginning. We all different forms of ESP. But is it strange that every female in my moms side of the family...
    SimplyZero SimplyZero 13-15, F 1 Response 1 hr ago

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    The thing that makes me most angry about people who constantly lie to you, is the fact they think you are not smart enough to figure out they are lying. When you have, they persist...
    JustmeraeAgain JustmeraeAgain 46-50, F 1 Response 1 hr ago

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    I lost my father to cancer on February 8, 2014 . I was just shy of turning 16 . He's missed so much in these past 2 1/2 months . I think it gets harder everyday . He should be...
    awkwardprincess98 awkwardprincess98 16-17, F 1 Response 16 hrs ago

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    Besides getting cheated on ...there's always been this other boy who's always trying to grab my attention He's a football, baseball& basketball player for my school he's very...
    elitedancer14 elitedancer14 13-15, F 15 hrs ago

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    It's not a song to sing. In fact, I have many. I won't die, before I fulfil all of them. Nothing will kill me, before that.
    AyushCR7 AyushCR7 13-15, M 1 Response 13 hrs ago

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    Napa Anti-Renovation Specter By Paul Dale Roberts, HPI Esoteric Detective HPI (Hegelianism Paranormal Intelligence) International https://www.facebook.com/#!/groups...
    PaulDaleRoberts PaulDaleRoberts 51-55, M 12 hrs ago

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    He is a teenager , and when my husband is away he keeps me satisfied. Should have done it years ago
    wendy1979 wendy1979 31-35, F 1 Response 12 hrs ago

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    I went to the movie theater today to see Rio 2 (pretty good movie) as my sister wanted me to go and meet two of her friends. And everything was going decently to me, but after the...
    CeruleanWolf CeruleanWolf 18-21, F 11 hrs ago

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    I was in a foreign land, a sort of wilderness. I discovered a tunnel in the outdoors with the walls ceiling and floor full of vines and there were large spiders nesting amongst it...
    AngelofPink AngelofPink 18-21, F 1 Response 11 hrs ago

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    I'm home alone with my brother for 4 days..all my family have gone away for 4days...as much as I like being Alone my anxiety makes me feel like I'm on the edge all the time and I...
    pardz pardz 22-25, M 10 hrs ago

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    Stuck between RN or Respiratory therapist or a Teacher I love kids I have a lot of patients with them /: but my parents wouldn't like it blaaH
    Ehmalee29 Ehmalee29 18-21, F 4 Responses 10 hrs ago

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    So I have a friend that used to be on ep, her name was paige1998, and she deleted her account awhile back, but she made a new one, its called shortandchubby, so yeah she is back...
    GhostInDaCloset GhostInDaCloset 18-21, M 9 hrs ago

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    I can't sleep at nights i remember all the bad words that i have been told and it get's me crazy i feel like i can't control myself i just want to cut and cut as deep as i can i...
    rawan99 rawan99 13-15, F 1 Response 8 hrs ago

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    I don't have anyone that understands me or the situation I'm in
    crazyminds crazyminds 18-21, M 7 hrs ago

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    HELP PLEASE :( About 2 or so months ago, I got this bad gingivitis. My bottom right gums were burning, tender, bleeding, sore and were really pale in color and had a white line...
    sugarcakes143 sugarcakes143 18-21, F 7 Responses 7 hrs ago

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    A really disinterested, bored teenage shop assistant roboticly said to me, as I came out of the changing room after I tried on a pair of Jeans, "How do they fit?". I replied "They...
    celtusa celtusa 46-50, M 1 Response 7 hrs ago

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    So today I'm going to the festival of colors with a friend and I'm extremely nervous like I feel like I'm a bout to have a panic attack like what do I do
    ShattertheMemories ShattertheMemories 13-15, F 7 hrs ago

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