I Have Mastocytosis

Mast cell abnormalities 57 People


    I have always had unexplained illness, allergic to everything! About 4 years ago I started having random facials edema, throwing up all the time. Then it progressed to anaphylaxis in the middle of the night, in a hot tub, hiking. I would hives for more then 8 weeks at a time...
    FFwife12 FFwife12
    31-35, F
    Feb 6, 2013

    Possible Systemic.

    At 6 months old I was diagnosed with UP. My parents were never told to give me any medications or anything as far as treatment, I jus had to deal with it and that it would be gone when I was 16 or hit puberty. It never did. I am going to be 23 this year and still no end is in...
    theSpottedLoiterer theSpottedLoiterer
    22-25, F
    2 Responses Mar 6, 2011

    I Have Systemic Mast Cell Activation Disorder

    Hello,I have been diagnosed having systemic Mast Cell Activation Disorder by my doctors in Mayo Clinic in Rochester, MN. I also have been diagnosed with a Rheumotoogy disease called DISH which is a degenerative immune disorder that is similar to a degenerative disc disease. In my...
    tnewton4 tnewton4
    1 Response Feb 11, 2011

    Frustrated For Years

    I have been suffering with an unknown illness for 3 years now. Have had several episodes of dangerously high blood pressure, followed by stomach pain, red face, itchy throat, eye pressure and then faint, when I wake up my blood pressure is very, very low, I am blue (look dead...
    patcrrn patcrrn
    61-65, F
    Nov 10, 2011

    1yr Old - Could This Be Mastocytosis?

    Hi There all,   I may be in the complete wrong place but I am wondering if you would willing to give me your opinion on my son and his symptoms.        I watched a medical show a while ago that featured a child with the exact same symptoms as...
    gurugm gurugm
    22-25, F
    3 Responses Oct 8, 2009

    New Life?

    I was diagnosised with systemic Mastosytosis a few months ago after having my 1st flushing episode.  I was home alone with my 2 young kids and didn't know what to do.  After a series of blood test and a bone marrow biopsy, it was confirmed I have this disease.  My...
    ajjb1020 ajjb1020
    36-40, F
    4 Responses Feb 21, 2009

    All My Symptoms Seem To Fit, But I Can't Find A Good Doctor!

    I am a 46 year old man who has suffered from asthma, hives, digestive troubles and generally itchy skin for the better part of my life. I have isolated and removed any significant source of amines from my diet, and that appears to have helped my gut, but I still suffer from...
    moeglein moeglein
    1 Response Mar 28, 2012

    Hello! I am almost positive

    that I either have Mastocytosis or MCAS. After a stint with an extremely itchy rash, I am now taking Allegra and Zantac. I am also thinking about beginning a low histamine elimination diet. I have my diagnostic appointment in January. I am wondering if I should stop the...
    Shelly3323 Shelly3323
    41-45, F
    Dec 12, 2014

    Do I Or Do I Not

    Hello All- I have been reading various entries, and YES- the time that you spend to tell your stories is very helpful and I thank you! Here is a bit of mine: -May 2011 worst "seasonal allergies" ever. -Steroids, antibiotics did not do the trick for very long -Sinus surgery by...
    suz64 suz64
    51-55, F
    Jul 26, 2013


    I was diagnosed with mastocytosis in 2009 after I came back from California, I got quite badly sunburnt out there and ever since then, that's when I've had problems with my skin, I now have marks all over my body, I'm incredibly self conscious of my body everyone always asking...
    naomiwhiteley naomiwhiteley
    18-21, F
    Feb 15, 2013

    Finally A Diagnosis

    My name is Kim and I'm 43 years old. I have been activly searching for answers to health issues since 2007. I didn't realize that some of my health issues even earlier on in my life would all come together into this package called Mastocytosis. In the last four years I've learned...
    kimmig68 kimmig68
    4 Responses Oct 23, 2011

    Research Studies

    Hi, for those of you that don't know, a lot of clinical trials for mastocytosis can be found at www.clinicaltrials.gov.
    dermstudies dermstudies
    Mar 9, 2012

    MY Boyfriend Has Mastocytosis

    2 Responses Jun 16, 2009

    From Carcinoid Cancer To Mastocytosis

    I'm 23 and my story begins from when I was in high school. I honestly have no idea how I managed to graduate and actually go to college. I started getting sick my freshman year of high school and it only progressed as I got older. I would have strep so bad I'd be hospitalized...
    Misslucero89 Misslucero89
    22-25, F
    8 Responses Jan 23, 2013

    My Three Year Old Has Mastocytosis

    i have a three year old daughter that was diagnosed with ultomia pigmentosa when she was three months old .We live in a state that not one doctor knows anything about the disorder we even got sent to other states,to there childrens hospital . I need help finding a doctor or...
    kimberlyanderson kimberlyanderson
    26-30, F
    Jun 4, 2012

    5 Year Search From Depression To Mastocytosis

    Hello, I am 39 years old and i live in the Netherlands. 5 years.ago i was diagnosed a depression/burnout. I had difficulty concentrating. After that i experienced different other symptoms. I flushed occasionally on stressfull moments and when i was at the hairdresser and got a...
    Estehouwer Estehouwer
    Apr 5, 2013

    I was recently diagnosed with systemic

    Mastocytosis. For years I've struggled with a horrible rash on both legs and arms and now it's spread. I have also had numerous broken bones. I was told for years that I have osteoporosis but now we realize that the mast cells are literally eating up my bones. I have started...
    MickeyW49 MickeyW49
    66-70, F
    Jun 29, 2015

    So I was diagnosed with UP mastocytosis

    and it's not easy. I have it all over my head,scalp, and a tiny bit on my neck. So when my hair is tugged or pulled or styled or messed with, I get a reaction. I found ways to deal with it though. Today I went from breast length to shoulder to jaw length. Cutting my hair helped...
    oreocooky oreocooky
    16-17, F
    2 Responses May 5, 2014

    I'm a 59 year old male

    and was diagnosed with Systemic Mastocytosis back in 1987. For many years, I experienced excessive bone pain (especially in my knees which I had to take cortisone shots to relive the pain) headaches, pruritus and flushing just to mention a few issues I experienced constantly...
    ItaliaProud ItaliaProud
    61-65, M
    Apr 14, 2014

    Ongoing Struggle

    Hi. I'm 17 years old. I'm joining this to reach out. About a year and a half ago, I started having dull stomach pains. Well in December 2011, the pains intensified. I started undoing a series of tests and finally, a biopsy from a colonoscopy revealed that I have mastocytosis. I'm...
    Kaymaye Kaymaye
    1 Response Jun 13, 2012

    What the Hell Do I Have?

     I have been suffering for a year from the severe itchiness.Finally I found a dr who knows what the problem is,but he knows only a little bit about it.Mastocytosis,a rare inherited disease that has many forms but little information.So I am now taking meds for a noncurable...
    blackcat blackcat
    22-25, F
    14 Responses Nov 18, 2007

    My 18 Month Old Angel Has Masto/up

    When my daughter was 4 months old, I noticed several small "spots" appear on her abdomen. They started out red and then went to a brownish tint. I fnally got her pedi to send her to a dermatologist. Once we saw the derm, he did a biopsy on her and diagnosed her with mast/UP. She...
    1 Response Jun 10, 2011

    Living With Mastocytosis

    I have been living with this very rare condition known as mastocytosis for 14 years, my entire life. I was born with large blisters that would bleed, but now I have worked my way down to stage 2 of this disease. I have tan spots on my stomach and back. Those are where the cells...
    londenbergm londenbergm
    1 Response Jul 17, 2013

    I Was Once Called A Hypochondriac, And Now I'm Just A Medical Marvel.

    It wasn't often that I would be looked at by my physician like I was absolutely insane. It was even more common for me to wake up in the morning wanting to die. I spent my entire educational career waking up in the morning with stomach pain, cramping, and vomiting. What my mother...
    mastomommy mastomommy
    26-30, F
    Jul 27, 2012

    My Short Story

    I was diagnosed a almost 2 years ago with systemic mastocytosis. I have had symptoms all my life of being mildly allergic to most things, mainly I had a huge aversion to red meats. Things got worse when I was 14, I started having severe stomach pain and throwing up. I went to...
    Ldb96 Ldb96
    18-21, F
    2 Responses Oct 27, 2013

    I Have Systemic Mastocytosis

    I have  systemic mastocytosis.  I don't know how long I've had this, but I have been to  specialists and basically been told "There's nothing wrong".  I've even picked up on hints that some of my symptoms might  be in my head.  The stomach distress, the extreme vertigo, the...
    shipleyols shipleyols
    2 Responses Oct 23, 2011
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