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Mastocytosis and Mast Cell Disorders

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  • Social security disability

    Has anyone with systemic mastocytosis applied for social security disability benefits? I have worked in the HVAC trade my whole life and can't handle the heat and humidity any more. I have been looking into a medical retirement and the social security process sounds like it can take a long …

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  • Extreme Degranulation Event

    Hi everyone. I am having a really bad degranulation event. I can't seem to get it under control. It has been going for almost a month. I went to the allergist, saw his new NP, and she had no answers. They want me to try Allegra, but I am leery of trying another med as I had reactions to Nexium …

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  • New to this, tons of questions!!

    I have been, I suppose, unofficially diagnosed with mast cell activation syndrome based off my symptoms and the results of an elimination diet. I haven't been blood tested and haven't had a bone marrow biopsy yet because until I get health insurance I am paying for everything out of pocket. …

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  • New forum for Masto’s

    I’ve been using this forum for almost a year now to help find a correct diagnosis and this site has been very helpful. But, there is a new forum dedicated to this evil disease from “The Mastocytosis Society” TMS. It is hosted by “inspire”. You can find the forum if you go to the TMS homepage and …

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  • Anyone else have problems with plastic implants, etc.?

    I probably have had masto for years, but not until I went into allergic shock and died for a while that the doctors decided to test my tryptase which was high. I am on Cromolyn, Claritin, Zantac, Protonix (will have to switch because of lactose newly added), flonase, and an inhaler. I had a …

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  • Benzalkonium Chloride Free Eye Drops

    I was diagnosed with an MCAD, probably MCAS, earlier in May.  I've been using cromolyn eye drops for almost two months and ketotifen for almost a month with no problems.   As far as I can tell, virtually all non-single-use cromolyn and ketotifen fumarate eye drops have …

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  • Need advice on getting a diagnosis

    Hello im currently being tested for mast cell disorder, recently diagnosed with Asthma which has gone from mild to chronic in 1 year, I was put on high does inhalers that didnt help to relieve my cronic cough and tight chest i asked to be tested for mast cell issues, the nurse didnt know much about …

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  • SLEEPLESS

    Hi girls I'm not sleeping and drives me crazy I start yawning before bed and when I do try to sleep it all disappears no matter what I take or do can't seem too,it's now warm here as well that's not going to help either it's not night sweats that is causing this though because I …

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  • Want the world to know about MCAS?

    Hi everyone,  I am creating a podcast about MCAS and why it’s so hard to get a diagnosis (it took me 10 yrs). I want to explore why doctors often misdiagnose people who have MCAS or pass them off as hypochondriacs. I want to interview people with this syndrome, and focus on educating the …

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  • Overwhelmed and confussed

    Hi all,  I am in the process of testing for what seems to be systemic mastocytosis.  My doctor has done blood work and I had biopsies done on Tuesday during my endoscopy and colonoscopy.  She said that there is a link between this and my POTS (postural orthostatic tachycardic …

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  • Mast cell activation and pregnancy

    So I am getting tested for mast cell disease after many years of illness. I think my parents assumed I had severe allergies, but as I matured I have had more and more health problems, including multiple anaphylactic reactions, even to medications. I also have chronic hives, daily, especially at …

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  • Two specific MCAS Questions, please!

    I have two specific questions please: 1.  Breathlessness & MCAS. 2.  Orthostatic HyPERtension & MCAS ​1.  The lists of symptoms always just say 'breathlessness', please could anyone tell me how this manifests in their case - e.g. is it all the time or only on …

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  • Is it possible to have MCAS and autoimmune disease

    I'm so lost... my allergist thinks I have mast cell activation syndrome and my rheumatologist thinks it's just my lupus.... I also get thorat swelling and anaphlatic reactions from foods and sents... rheumatologist told me that's just a allergy. I also told him I have hasimotto and …

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  • MCAD from a titanium breast marker clip or other implant?

    Hello, I have a host of health issues that contribute to MCAD such as chronic lyme disease, mold exposure, POTS etc... I started having MCAD in August two days after starting some new antibiotics for lyme disease. A year and a half ago I had a titanium breast marker clip put into my breast during a …

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  • 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 …

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  • My last ditch attempt in trying to live...please help

    Someone please help me Ive tried so hard to deal with these medical problems that it has led me here in a last ditch effort for help. Im going to be completely honest in hope that someone in the community can save me. Im on the verge of possibly commiting suicide because I can no longer see the …

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  • MCAS and Hydrocortison intolerance

    Hello, This is my first post here and I like to thank everyone for reading and repliing I have CFS/MCS MCAD/Mcas and Mitochondria problems. So a bunch of things. Due to all this stress my Adrenals became risky weak. Now I´m in a very severe state and overwhelmed, because: I´ve got a …

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  • Paediatric mastocytosis

    My one year has just been diagnosed with sm. We live in Ireland where there is no specialist in the area. We would like to have her seen by a paediatric specialist in the UK. Does anyone know of an centres that specialise in sm in children where she can get treatment?

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  • Difficulty with doctors taking you seriously?

    Hi everyone. I'm new here. I have not received a formal diagnosis yet, but am in the testing process. It's a little unnerving because I have virtually all the symptoms and signs. The "allergy attacks" started on 6/28. I had a ten day span where I had anaphylactic reactions …

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  • Mast cell disorders and tattoos

    I don't have a formal diagnosis yet however I do know I have some form of mast cell issue. I was wondering if it is safe to get a tattoo and if there are any special precautions I need to take?

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  • Just told mast cell disease now what to expect

    I have been searching for answers for over 2 years and was just told from blood and urine work up that this with symptoms looks like mast cell. I was put on zertec and zantec and suppose to go back in 6 months. I had severe flushing and hives on face and neck and heart racing, anxiety feeling all …

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  • nm3 nm3

    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, legs...etc. I felt run down all the time, dizziness after eating. Fast forward to today, I take a load of …

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  • 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 …

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  • Anti depressant / anti anxiety

    I have an over production of mast cell in my stomach and high esenophil count in my esophagus . I need to be on an antidepressant / anxiety pill. Every one I try sets off my mast cell. Any suggestions of ones that have worked for you ? I am on gastrochrome and Allegra for my mast cell condition

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  • 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 ?

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  • 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 …

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  • 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 …

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  • 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. …

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  • 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 …

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