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What testing should I look forward to be properly tested for MCAS
Autoimmune Diseases | Last Active: Sep 3, 2023 | Replies (45)Comment receiving replies
Moylandavis, you are right. Remarkably, my husband's best friend got diagnosed with mastocytosis and, in his private plane, used to fly up to the Mayo Clinic for consults and... Now? He is seeing a receptive Dermatologist in Lexington, Kentucky (an hour's drive from his home). He also has an Oncological Hematologist in Kentucky. Last I heard, his serum tryptase was in the 30s. Cause for concern. It's my understanding that a reading of 20.0 or above may indicate the need for watchfulness and possible bone marrow biopsy.
Have no idea why Mayo Clinic bowed out.
Have yet to click on the link you provided but looks like something we ALL need to read. We must commit to self-education! Many thanks for sharing that resource.
Final comment/question. I keep seeing references to ehlers-danlos but am not clear on what it is or if I've understood correctly, am misremembering. Is it related to extreme flexibility of joints? Forgive me if I seem lazy, if I fail to educate myself (again). If I am remembering correctly, I am famous for my extreme flexibility (and I'm going on 70!!!!).
Again, grateful for that link. Will click on it. right. now!!!
Replies to "Moylandavis, you are right. Remarkably, my husband's best friend got diagnosed with mastocytosis and, in his..."
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Yes, EDS is a joint disorder and commonly is a comorbidity with MCAS, as it HATs and POTs.
Dr Afrin, who was the lead on this guide, wanted to provide the guide for free and did so on the EDS website...through the medical journals, you need a paid subscription. He addresses it to Gastroenterologists but really any Doctor who is curious can benefit from reading.
Mayo and so many other medical institutions and medical practices have decided to not seek MCAS patients or allow them to be referred in. We just take up too much time and the Insurance companies will not compensate them for their time. We are just too complex. And testing is just too difficult. I have taken me 4 years to get a positive hit on a lab test...I also have elevated Mast Cells in my GI tract...Even with the elevated Mast Cells, the Lab refused to run further test that would give more clues to what type of Mast Cells and their features. I'm sure it is an insurance thing! So many practitioners are hung up on Tryptase.