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Mast Cell Activation
Is there anyone that has MCA?,I live in Duluth and have just begun all types of testing for this nightmare (I.e. Blood test and bone marrow and 24hr Urinalysis)and they always come back negative in the since of trying to diagnose but I have been dealing with this since last year but didn't know what the heck was going on in my body.It started with just a skin rash at first but since last year till now I have developed allergies to foods I never had and now my body is so sensitive to heat change because within seconds my feet start tingling then swelling starts then my hands start swelling and the full breakout begins (niacin flush type feeling begins and doesn't stop)little scab like rash (like what fibromyalgia patients get)then the felling of vomiting begins.So I am so frustrated because all test keep coming back negative to get "DIAGNOSED"for MAST CELL to see how to treat it,even though I know that it is even the Oncologists and Allergist believes it is MCA so having to be my own advocate and research I have begun the "Low Histamine Paleo Food Change" But trying to cope day to day and for the most part living in my bedroom because I don't want to freeze out my wife or just feeling like my life is being robbed and my personality and to make things worse Dr.Afrin is booked out till 2018 and someone told me here in Duluth that is who you must see,so there goes that idea.I just sometimes want to give up because sometimes this Mast Cell makes you feel like you are loosing your mind.And I have no one to talk to that can relate to this,so there is my ramblings is there anyone who I can talk to that has this "CRAP".
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Hi @jpearo. I also have asthma like symptoms that have gotten progressively worse over 6 years. Then I started getting the flushing on the face and I’ve have reflux for years. All symptoms of MCAS, although tested negative for blood tryptase and histamine and prostaglandins in the 24 hour urine, probably because I take NSAIDS. Anyway, I just read a research article by researchers at Harvard on diagnosis and symptomology of MCAS. All the symptoms you describe were listed in the article. Go http://www.tmsforacure.org for more info. I lived the nightmare for years and continue to have breathing problems even though I have a diagnosis. We are working towards getting them under control so
I am hopeful that day will come. It sucks not being able to breathe especially since I am distance runner and tennis player. I keep going though, one day at a time. I have a great psychologist who has helped me through major depression episodes and continues to support me emotionally. An immunologist should be able to help you and I hope the one that sees you knows about MCAS, which they are finding is not that uncommon. But doctors need to rule out other diseases as the WHO criteria for MCAS is very specific. I don’t fit their criteria but I responded to the treatment. I hope you get some answers soon so you can begin living a better life again.
I have had a rash for about 6 or 7 months and the doctors can’t figure out what’s going on. This year I have started almost having constant asthma like symptoms. I’ve also experienced headaches, diziniss and occasionally episodes of random diarrhea. The drs told me it is anxiety. I am now thinking I’m losing my mind because I know these symptoms are real. My symptoms seem to get worse with stress. I scheduled an appointment with an immunologist. I also had a biopsy come back as a drug rash so that makes me wonder if something more is going on. My symptoms seemed to get worse after drs kept prescribing me antidepressants which I reacted horribly to. This situation sucks. I’ve also been having episodes of numbness in my face, tongue and hands and feet. I am over this nightmare.
No.... just taking ibuprofen... which then hurts my stomach... I should ask...
Ketotifen is another mass cell stabilizer, like cromolyn. Have you tried it? Maybe that one won’t give the same side effects.
Did you ask your doctor about pain meds for your headaches? I have meds specifically for pain
My allergy pulmonologist is at a large university setting. There is a data base of physicians that treat Mass cell disorders at http://www.tmsforacure.org. It’s the website called The Mastocytosis Society. If you can’t find a specialist in your area, maybe you can call one of the physicians closest to you and they can refer you to a someone in your area. Every doctor has different training experiences, just like I am a physical therapist and I know how to treat certain diagnoses that another PT may not simply because my internships were different than theirs and I may have come across a patient with an uncommon problem, but my experience taught me how to treat them. Please keep looking for a doctor that can help you. I know it’s frustrating. It took me 6 years to get a maybe diagnosis. I was an addicted runner who ran 6 days a week, 9-10 miles. Having that taken away from me sent me into a major depression. Don’t give up even though this is the suckiest (yes, that’s professional jargon 🙂 ) disease.
So happy to know theres someone else with breathing issues too! I was starting to think it was all in my head since I dont get hives which is like, the number one sign you are having an allergic reaction. I was tested for asthma early this year because of my breathing symptoms, but I was found to actually have better than average breathing capacity (Im a tuba player), I think Im currently in a flare as well and Im just waiting for that to pass. I guess Im on a low histamine diet, simply because Im allergic to the foods that are high in histamine (dairy, egg, gluten, peanut, tree nuts, sesame seeds, soy, shell fish, coffee and anything with cinnamon makes me feel really sick) and I dont buy any prepackaged meals simply because I cant (although I wish I could because I absolutely hate cooking). Im really just hoping to get a diagnosis soon because I found that some people have started training dogs to alert when their mediator levels are rising and theyre about to have an allergic reaction. I currently have a service dog to help me avoid my dairy and gluten allergy and if I had that diagnosis I could start teaching her to alert to that. The dogs that have been trained to do this are able to give their handlers a 15-20 min warning, which hopefully is enough time to take benadryl in order to lessen the reaction (since thats how long it usually takes for benadryl to take effect). I will look into finding an allergy pulmonologist in my area, I did not even know those existed, thank you!
Hi, I am having different but similar struggles also. I have MCAS which I only recently figured out in the past year with an allergist and GI doctor. I have type 1 diabetes and celiac and some other more minor auto immune issues- hypo thyroid, Reynayds, etc. The MCAS for me is bouts of 3 or 4 am (always around this time) severe bloating nausea diarrhea vomiting, low blood pressure where I can’t keep my head up, sweating, flushing, shaking. I can’t stand these episodes. I started a low histamine diet but now with celiac there are so few things I’m able to eat between low histamine and gluten free. And I’ve been taking antihistamines but still getting these attacks, so just started Chromolyn Sodium and it’s now giving me really bad headaches. I don’t feel like my allergist knows enough about MCAS and there’s no one who can take me as a new mast cell patient. I’m having times of feeing hopeless and scared this won’t get better. I need to find someone who has figured out how to live with MCAS and how to deal w the headaches so I can take the chromolyn. I have skin symptoms too, but no breathing issues... it’s my gut and skin affected. Not sure what to do at this point. I work in a full time professional position and then do other part time work. Struggling...
I can understand how you feel about not wanting to live with your symptoms and not feeling like it's getting better. There are times when i don't want to live and think about ending my life. I work part-time and see doctors part-time. I was diagnosed with MCAS about a year ago after living with my shortness of breath, chronic muscle and joint pain, headaches, fatigue, tremors, reflux, etc. I also have fibromyalgia (which is a real disease, acknowledged by rheumatologists. And i treat many patients with FM as I am an aquatic physical therapist.) and really bad osteoarthritis mostly in my spine. My symptoms, the worst one being shortness of breath, started in Aug 2012. I have a rheumatologist that has worked with me from the beginning of all this. Initially they thought it was asthma, but i have never had any history of asthma and never smoked. So i tried all kinds of inhalers and was put on prednisone and given a rescue inhaler for the breathing issues. The ran allergy tests and i am allergic to walnut and olive trees. I don't have food allergies that i am aware of. I do have very high IgE, which is antibody produced by the immune system in response to an allergen, and means i am a very allergic person. I had been working with an allergy pulmonologist to control my severe and persistent asthma, who thought i might have MCAS. I never thought i truly had asthma because my symptoms were not typical of asthma. I get chest tightness and pain in my ribs and intercostal muscles that make it difficult to breathe. I actually have to take pain meds so it doesn't hurt so much to breathe. You are the first person that has posted with the same breathing symptoms that I have. Fortunately, I have not had an episode of anaphylaxis. I can imagine how scary that is, not being able to breath is the worst feeling in the world. The allergy pulmonologist has put me on high doses of H1, H2 antihistamines, two inhalers both with steroids, oral prednisone and i have been on Xolair since 2013. We have talked about trying ketotifen, which is a mast cell stabilizer but I am hesitant because I already on 18 other medications. I am so tired of taking meds; i am on first name basis with everyone at CVS and they greet me by name before i get to the counter, which surprises all the other customers in line. I carry epipens with me at all times since anaphylaxis is a symptom of MCAS and can be triggered by Xolair. I am currently in a flare up because I am having a lot of difficulty breathing deeply and feel short of breath most of the time. I recommend you find an allergy pulmonologist, who should definitely be on your team of doctors. I also see a cardiologist twice a year to monitor my heart as I also have chest pains, tachycardia (fast heart rate), and high blood pressure. The heart can also be affected by MCAS. I hope you find a pulmonologist that can help you with your breathing issues. You are the first person that seems to have similar symptoms to mine. Let me know how are doing.
Hello! I have just come across your post and I’m so happy to know I’m not the only one! About three years ago i randomly developed a dairy allergy that had progressively gotten much worse and over time i have become allergic to many more foods (the most recent being coffee). I told my doctor that even though I was avoiding the foods I was allergic to and being really careful I was still having allergic reaction with no cause, even when I didn’t eat anything which made him suspicious that I had mast cell activation syndrome. I did the 24 histamine as well as a tryptase year during my consultation and they tested for the kit mutation, all of which came back normal. Because of this, he determined that I did not have MCAS. However, my symptoms have been getting worse, starting in around late December I started having an allergic reaction pretty much every day (mine always present themselves in shortness of breath or worse) as opposed to my normal once a week and just this Friday I had to use my epipen because of a reaction to who knows what. I was on the bus back to my apartment when I started feeling chest tightness and shortness of breath, I thought it was just another minor reaction but then I got to the lobby and started coughing and I almost didn’t make it to my apartment because I was so dizzy and lightheaded. Finally when I started flushing I decided to use my epi which stopped my reaction. My PCP decided to put me on medication despite the test results to see what would happen, I am on H1, H2 and leukotriene blockers, they’ve helped make my reactions less severe but haven’t decreased the amount. I’m just super frustrated because my PCP doesn’t know what’s going on and I feel like my allergist has given up on trying to find out what’s wrong. I’ve had to use 7 epipens in less than a year- and that’s despite the fact that I only use them when I have no other choice (which I know is bad) because I’m terrified of needles. I’m started to get really scared that I’m never going to get a diagnosis or start getting better and that my symptoms will just continue getting worse... I don’t want to keep living like this, always scared of when my next reaction will hit.