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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.
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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.