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Mast Cell Activation

Blood Cancers & Disorders | Last Active: Nov 25, 2023 | Replies (117)

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@leilanis

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.

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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...

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!