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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. 19 People

    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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    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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    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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    Related Experiences

    Oh, where to begin... I'm not sure if he has NPD or if he's just very narcissistic, but he's definitely not an easy person to live with. I experienced abuse as a child from my...
    chococat159 chococat159 18-21 49 mins ago

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    I have a Demyelinating Disease. MS is also one of these diseases but mine is a new type. I have lesions scattered through out my brain and on the underside of my Corpus Collosum...
    BCulp38 BCulp38 41-45, F 1 Response 8 hrs ago

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    I was recently given a provisional diagnosis of Schizotypal Personality Disorder. It seems strange because I always felt there was something wrong. I have always had these stray...
    Explorerofknowledge Explorerofknowledge 18-21, M 5 hrs ago

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    So if you have been following my story at all you know that I am kinda odd and keep getting myself into some strange circumstances. My ex husband is one of 5 children. He has 3...
    daughterofapreacherman daughterofapreacherman 26-30, F 2 Responses 3 hrs ago

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    I am 39 years old and have been dealing with LS for about 10 years. It almost exclusively affects my perineum. I have had some minor tearing (paper cuts) but my main 2 symptoms...
    TiffanyPerkins TiffanyPerkins 36-40, F 1 Response 3 hrs ago

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    I know, that's not supposed to be possible. People say it's not possible, that I'm deluding myself. I'm looking for a way out, I secretly hate her, we must have a sexless...
    roykirk roykirk 41-45, M 2 hrs ago

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    okay so there's this guy in my school and he's one of my 2 close friends and i like him so much. like I've never felt this way about a guy before because I've always thought I was...
    cookingaubrey cookingaubrey 13-15, F 1 Response 1 hr ago

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    I have telepathy. I'm pretty sure all females in my family inherit it, from my dads side though. Me and my sisters have a weak telepathic link. We can all tell each other things if...
    AleaAndLexi AleaAndLexi 13-15, F 1 hr ago

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    I guess I do. I always knew I was strong, but I never knew the extent of it until recently. I got a message from someone today, in my inbox. I could see that I had spoken to...
    Babydoll42 Babydoll42 41-45, F 4 Responses 36 mins ago

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    I have always been rather prone to health anxiety and it was worse when I was younger. As a child to read of symptoms would always make me imagine I was feeling them. I have...
    macmann macmann 56-60, M 3 hrs ago

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    It's true. I'm 30 years old and I've politely declined every opportunity thus far to get drunk, smoke a joint, or light a cigarette ... and believe me, there have been several...
    sls84 sls84 26-30, F 8 hrs ago

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    It's true. I'm 30 years old and I've politely declined every opportunity thus far to get drunk, smoke a joint, or light a cigarette ... and believe me, there have been several...
    sls84 sls84 26-30, F 1 Response 7 hrs ago

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    I have experience with many things. I have knowledge of many things. I have time to do the things that are important. This is one of the things I choose to do with this experience...
    tryingagainII tryingagainII 56-60, M 7 hrs ago

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    I have had a socialphobia and I don't have any friends last year I got one and she just changed this year she is always so negative and hatefull and this is making my Depression...
    yoyo526 yoyo526 16-17, F 7 hrs ago

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    I have a request - can you people stop messaging me asking me if I want to have your babies? Cause the answer is and will always be no :p No, I am not pregnant No, I don't want...
    sugarcakes143 sugarcakes143 18-21, F 1 Response 1 hr ago

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    "Hmm...let me see...I'll take one of those, and one of those and, oh, I'll have 2 of them at least...(them being a blonde, brunette and 2 redheads...'just won't let them know...
    stiltcourt stiltcourt 41-45, F 3 Responses 10 hrs ago

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    I have been sober from alcohol abuse for almost 3 years not and drugs a year and a half which I am very content with and proud of myself for such effort and accomplishment into...
    Angelanorexic Angelanorexic 18-21, F 18 Responses 7 hrs ago

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    Welcome to the family- The people that you (& I are really close to & trust can be considered family. I never believed that you have to be blood related to be family. I have always...
    theswordinthestone theswordinthestone 41-45, M 6 hrs ago

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    How can I get some real good and fun friends in the uk ? I was living in Florida before and moved to uk after I got married few years ago my wife from the uk and now we are...
    krsexp krsexp 36-40, M 4 hrs ago

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    most people thinks if you have a pretty face , you dont have a sense humor. thats like so pathetic ..
    PinkLipstick00 PinkLipstick00 18-21, F 2 Responses 2 hrs ago

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    I think out loud more than I really write on EP. :p I usually cringe a bit when I post something where I've just been thinking out loud. I'm not sure what convinces me that what I...
    Friability Friability 18-21 1 hr ago

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    I went to the ER by ambulance and was in the ER for 24 hours while they were trying to figure out what to do with me. While in the ER I was considered a SI reason (suicide ideation...
    sadly203 sadly203 18-21 1 Response 1 hr ago

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    I wonder how many people have mistaken me for the opposite gender since I don't have mine listed. o_o Not many, I'm sure. *continues to wonder about it anyway 'cause why not?* :p
    Friability Friability 18-21 1 Response 1 hr ago

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    was a little off the other night,and might have offended a few people,including ep allie who i said probably had a bigger **** then me,and several other things that wont be...
    spoonandstretch spoonandstretch 41-45, M 1 Response 54 mins ago

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    Its funny when trolls get mad when you call them out. If you want to attack people have at it but at least make sure you have something to back it up. You can run your mouth all...
    xxladyjadedxx xxladyjadedxx 22-25, F 29 mins ago

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    Interracial relationships rock! My two strongest crushes have been on the gorgeous results of an interracial relationship! :P
    Starrkya Starrkya 18-21, F 2 Responses 11 hrs ago

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    Hi anyone else have a tumblr, or two, or three, or a blog? If so, share it as long at it IS AN APPROPRIATE BLOG, if I wanted **** I'd do that on my own time. http...
    Lovelife090994 Lovelife090994 18-21, M 11 hrs ago

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    You can't hear your own accent! So how do we really know we have one?
    MrTibbles2014 MrTibbles2014 26-30, M 7 Responses 11 hrs ago

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    It is just so unfair, but I know that the hereafter has better in store. I cannot help but cry and hurt so much. I feel so suicidal. I really have been through so much. From birth...
    SadAbdul SadAbdul 26-30, M 11 hrs ago

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    Just feel like today will not be great... I don't have the energy for it.
    AaliyahLove AaliyahLove 18-21, F 10 hrs ago

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    She is a moaning *****. But she does have great jugs.
    dirtyteenguy dirtyteenguy 18-21, M 10 hrs ago

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    Your worst enemy is your own mind. My mind likes to have my good side fight the bad constantly. Kinda like the angel and devil on my shoulder but they are in my head.
    whoscarlo5 whoscarlo5 18-21, M 1 Response 10 hrs ago

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    He contacted me thru facebook. I knew I shouldn't have met him. I am married with a kid, and faithfull for 8 years. I got drunk and ended up in bed with him. Very guilty now but...
    annehas annehas 36-40, F 2 Responses 9 hrs ago

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    I'm always unhappy, it really is like living in the dark. I have times where I can put up a front but yea..
    wedgieshurtalot wedgieshurtalot 16-17, F 1 Response 9 hrs ago

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    I find EP a good place to share my thoughts. It has taken me years to figure out how to do this. I use Facebook for those subjects I feel that are safe, however, EP is good for...
    tryingagainII tryingagainII 56-60, M 7 hrs ago

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    Hi there, this post is for the once who need some extra cash or just plainly need more money to live. I made a website that can help you. Just some short information about me and...
    Kayidan Kayidan 22-25, F 1 Response 7 hrs ago

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    i have had epilepsy since i was a young kid at school. thankfully i've not had any epileptic fits since i was a kid as it's been under control with my medication.
    GirlyAndrea1987 GirlyAndrea1987 26-30, M 1 Response 7 hrs ago

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    I have a british accent, and I never hear it as an accent unless I go to america, where all of a sudden I sound painfully posh and proper, and the people love it for some reason...
    afraidtodisobey afraidtodisobey 16-17, F 11 Responses 6 hrs ago

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    So 15 yrs ago the town I was living in flooded. My buddy's apartment complex had 12 ft of water in the parking lot. And across the water you could clearly see just the 2nd floor...
    Drixie Drixie 31-35, M 2 Responses 6 hrs ago

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    Note to self- I'm tired of being strong all the time. So tired, I have never needed anyone or anything. I never needed you to love me or even like me just respect me. I can't win...
    KittyKurious KittyKurious 26-30, F 1 Response 6 hrs ago

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    my wife of five years has cheated on me with nine different guys that I know of three of them were friends of mine and one was my best friend, but I can't bring myself to hurt my...
    george2323 george2323 22-25, M 2 Responses 5 hrs ago

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    one day you will realized.. how much you are loved despite everything.. someday you will want to take me back but u won't anymore coz u urself pushed me to go away.. you don't...
    lostintropics lostintropics 26-30, F 2 Responses 4 hrs ago
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