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Mastocytosis and Mast Cell Disorders

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  • Redyne 1

    Xolair

    I am new to this group but have been diagnosed with MACS for over 12 years. I have done well on high dose steroids until June of this year. I went to the MAYO Clinic in in October. I spent 10 days in the hospital there, and after 7 weeks came home to start Xolair and wean off the steroids. I

    1 reply 0 votes Last reply
  • samantha96666 2

    Could I have Mast Cell Activation Syndrome?

    I'll try make this as short as possible. I'm a 21 year old female with Ehlers Danlos Syndrome and POTS. Over the past 2/3 years I've had 4 bouts of GI related problems (vomiting, severe diarrhoea, cramps etc) but they've never been caused by infection, food poisoning or a gastric flu. About a

    1 reply 0 votes Last reply
  • Aphra 2

    GI ATTACKS from Mastocytosis

    Does anyone else experience the piercing, cramping abdominal pain, nausea & diarrhea when degranulation occurs? It hits me so fast, I must carefully, but speedily get the the restroom! My lower back spasms while my GI track empties, leaving me extremely fatigued & deep aching bone pain in my back

    3 replies 0 votes Last reply
  • cindy65527 2
  • nm3 2

    Mast Cell Issues??? Please help...

    Ok, I'm needing some advice here. This issue all started about 5 years ago, in 2012. I started to feel cold, almost feverish, but no temp. I broke out in a rash on my arms, chest, groin, I felt run down all the time, dizziness after eating. Fast forward to today, I take a load of

    4 replies 0 votes Last reply
  • kerry91 3

    Mastocytosis?

    Hello everyone, I'm currently undergoing tests having passed the worst winter ever with reactions to wood smoke, pollution etc (I tested positive for allergies) and with GI problems worsening by the day. I already have pernicious anemia but that doesn't account for my strange reactions. My last

    1 reply 0 votes Last reply
  • Caracoveney 3

    Is this a squamous cell carcinoma and what should be done?

    Hallo.  I have been on various other areas on this site as have had a number of problems that have been treated, so this one has gone to the 'back of the queue' for a while.  About 2-3 years ago, I developed a new brown mole on the back of my hand.  I guess I should have had it seen to then, but didn't,...

    0 replies 0 votes Posted
  • JaneTx 3

    Statins help with MCAS?

    Was curious - has anybody with MCAS had a reduction in symptoms when taking statins for high cholesterol, particularly Fluvastatin?  I ran across an article in The Journal of Immunology called "Fluvastatin induces mast cell apoptosis and " (apoptosis: cell death)  As it seems to me that

    2 replies 0 votes Last reply
  • Aphra 2

    Gardening Activate Mast Cell Activation????

    Has anyone had Activation from gardening outside? Any tips or clues on the cause? 1/2016, traveled to Mayo Clinic & diagnoised with Mast Cell Disorder, CVID, Autoimmune of new meds H1, H2, H3 Blockers, , my hometown doctors ask me how to spell my

    3 replies 0 votes Last reply
  • Huntwc 1

    Back/muscle pain

    Hello, Ive just been told I have MCAS after my Dr discovered high histamine levels in my blood work.  I also have high mercury levels due to a seafood heavy diet. I have muscular back pain that started is obvious inflammation.  My Dr. believes it is being caused by MCAS.  I also

    3 replies 0 votes Last reply
  • grampus 1

    Question about Ketotifen

    Has anyone taken ketotifen for mast cell in the gut? I have been prescribed this to hopefully replace my gastrochrome. Any side effects ? Did it help with the mast cell activation ?

    1 reply 0 votes Last reply
  • gail90888 2
  • lisa99975 3

    Please help with symptoms!!!

    Hi I am 44 yo I have been overweight most of life so I suffer from all sorts of aches and pains that I relate to weight and being out of shape.  Anyhow recently I have had this weird feeling on left side under ribs almost like a bubling or gurgling of stomach and I can feel it when I breathe at

    13 replies 0 votes Last reply
  • JaneTx 3

    MCAS and Orthodontics (Braces)?

    Has anyone seen any correlation between orthodontics (braces) and MCAS flares? My daughter has been very sick with MCAS-like symptoms for almost 2 years now, and although she never had any "classic" nickel allergy reactions in her mouth, all her horrible system-wide symptoms started about 6 months

    0 replies 0 votes Posted
  • JaneTx 3

    MCAS and dissolveable sutures

    Do any MCAS patients have any experience with dissolveable sutures, such as VICRYL (polyglactin 910) or PDO (Polydioxanone)?  From what I've read, these sutures are designed to stimulate the immune system to generate chemicals to dissolve them, and am wondering if the immune system of someone with

    2 replies 0 votes Last reply
  • MissMary 2

    Excessive Mast Cells in Colon

    I'm 25, female and just trying to survive. I have had multiple procedures done, most recently upper and lower endoscopies. My gastroenterologist found an excessive amount of mast cells in my colon and started me on Pepcid twice a day. He said to see him in a month. I have been reading and have come

    3 replies 1 vote Last reply
  • michelle43974 2

    Trying not to go crazy

    I have always tried to be a positive, happy person but having mast cell disease makes it difficult some days. The isolation and anxiety that comes with trying to manage is enough to drive me mad some days so I try to focus on hobbies like sewing, writing, gardening (when the bloody wasps aren't out

    4 replies 2 votes Last reply
  • dmbarby 1

    Masto Flare up?

    Hello all, I am new to the group and am excited to have found this site. I have been clinically diagnosed with Masticytosis and I am unsure what to do right now. I have had an extreme amount of acid reflux, pain in my upper abdomen, hot flashes, flushing, upset sotmach, dizziness, extremme fatigue

    2 replies 2 votes Last reply
  • Alexi 3

    MCAS tests

    I believe I may have MCAS in addition to ME/CFS. What is the routine procedure for testing in the UK ? Do I need a referral to a specialist, and if so, which field of medicine is most appropriate ?

    3 replies 0 votes Last reply
  • StridAst 2
  • cheryl44643 2

    Been trying to find a doctor who'll pay attention for years.

    I'm 62 and I've been ill ALL MY LIFE. Never able to sleep properly, severe constipation, urinary pain and urgency, nausea, all from infancy. I learned to live with it all, never realising that it wasn't normal until I trained as a nurse. I always had allergies, rashes, always tore myself to shreds scratching,...

    40 replies 0 votes Last reply
  • debbie bje15199 2

    mast cell activation disorder

    I was diagnosed with mast cell Activation disorder and now I think my sister and my mom have the same disorder but it's manifested in different ways my sister has heart trouble (arythmia) and anaphylaxis allergies to shrimp and other Foods I react to stress and gluten and my mom reacts to food

    0 replies 0 votes Posted
  • craziwrld 1

    Question about testing for MCAS

    My doctor ordered 2, 24 hour urine tests for me to complete. One is an 11 beta prostaglandin F2 Alpha test and the other is a N-Methylhistamine test. So, my question about these tests is if I should just take them normally, or if I should eat the foods that I know that I react to since, yes I will

    1 reply 0 votes Last reply
  • rose00110 3
  • Jas375 1

    Doctor in my area

    Does anyone know of a good doctor for mastocytosis in Texas? Preferably West Central Texas? The nearest one I've heard of is in Boston.

    0 replies 0 votes Posted
  • nicole1978 1

    Recently diagnosed Celiacs questions about histamine intolerance

    38 year old woman, just this past month been diagnosed with celiacs. I started doing some reading and have found some interesting information. I am wondering if anyone out there has had the same symptoms as me and if they can help. Since I was about 8, I would have these random, recurring "episodes"

    2 replies 0 votes Last reply
  • Tumtum1963 4

    Mastocytosis or MCDS with autoimmune disease

    I have had random allergies, eczema and anaphylaxis three times in my life - once to a cat and twice as reactions to medications. I am a 53 year old post menopausal with diagnosis of hypothyroydism and Rheumatoid Arthritis (non erosive/ remitting) - both autoimmune but neither conforming to the

    8 replies 0 votes Last reply
  • amy81503 1

    is anyone else had this problem? ?

    I have Chiari. I was told i had it 10 years ago. I asked the neurologist what it was. He said my brain was 7 cm below my skull and he would keep an eye on it. And that was it! He moved on, and September of 2015 i was admitted to the hospital for 3 days cause i had alot of pressure on my head ,

    2 replies 1 vote Last reply
  • amanda95910 2

    Systemic mastocytosis - just diagnosed

    I have just been diagnosed with Systemic Mastocytosis and I was wondering if this illness always ends badly? My Haematologist has confirmed the diagnosis by BMB but he wasn't a specialist in this field so he has referred me to a Dermatologist who apparently I'd the specialist even though I have no

    6 replies 0 votes Last reply
  • Wishing 2
  • amy89817 3

    Possible Mast Cell Activation Disorder

    Hi, I am a 21 year old female who has been experiencing a multitude of different symptoms since August last year. I have been diagnosed with POTS (postural orthostatic tachycardia syndrome) but also feel that Mast Cell Activation Disorder fits more of my symptoms (the two diseases are linked anyway)...

    5 replies 0 votes Last reply
  • Stags 2

    New to Mast: Antihistamine Questions

    I was just diagnosed with POTS, and my doctor feels that it is from some Mast Cell Disorder, but it is not yet diagnosed through objective testing. It came on somewhat suddenly, in the last 3 months or so I dealt with odd intermittent symptoms, but it has been with me almost all of the time for the

    6 replies 1 vote Last reply
  • moga1951 1

    Mastocytosis

    I have been treated for systemic mastocytosis for the past 5 yrs, I also have a related bone marrow problem. Since my first signs of the illness, extreme fatigue, stomach problems,itching, rashes all over my body, I still suffer, despite treatment with extreme tirdness, itching and fatigue does any

    2 replies 1 vote Last reply
  • babsie1952 1

    Mastocytosis without rash

    My son has systematic Mastocytosis with the rash we were told it is not hereditary. Howeverthough no rash I have multiple symptoms over 20 . Yrs of differing diagnosis been,diagnosed with tachycardia chronic hives. Intestinal disorders have major difficulty with taking pills either I end up with

    0 replies 0 votes Posted
  • Stags 2

    New to Mast Cell Disease

    I was just diagnosed with POTS, and my doctor feels that it is from some Mast Cell Disorder, but it is not yet diagnosed through objective testing. It came on somewhat suddenly, in the last 3 months or so I dealt with odd intermittent symptoms, but it has been with me almost all of the time for the

    4 replies 0 votes Last reply
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