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Mast Cell Activation

Blood Cancers & Disorders | Last Active: May 27 8:45am | Replies (122)

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@leilanis

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.

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Replies to "Hi @jpearo. I also have asthma like symptoms that have gotten progressively worse over 6 years...."

Yeah I have really been struggling. I am an avid weightlifter so the breathing thing is hard. I just did a hard workout a couple of weeks ago and I could barely breathe at the end of it. I’ve never had that reaction to a workout before. I’m freaking out that this could be full blown madtocytosis or mast cell leukemia.