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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
You asked for information about testing…this guide helped me…I printed, read it, Filled out forms and shared it with my doctors…
Doctors who helped me : really any doctor who is familiar and willing to learn, and genuinely interested…In my case, a rheumatologist/immunologist who was so intrigued and spent tons of time devoted to helping me ( he retired last year) and my primary care doctor who is very knowledgeable about supplements. My 1st Allergist did skin testing and gave up…Allergist #2 started me on h1 and h2 antihistamines and on follow up appointment said he didn’t feel comfortable treating me…Allergist #3 is knowledgeable and willing to learn more…so I am making progress…dermatologist was clueless about MCAS and not interested in learning…
In my experience, testing is only useful if the doctors has a full understanding of what test to order and how biopsies need to be tested…AND the lab handles the sample correctly. 24 hr urine was negative the first time I tested but sample was mishandled ( by me and lab due to poor instruction)…and then positive when I worked with another lab and was given clear instructions…
Here is the link to the MCAS guide. Any doctor can follow this not just GI doctor.
https://www.ehlers-danlos.com/wp-content/uploads/MCAS-Primer-for-the-Gastroenterologist.pdf
And last I heard! Mayo Clinic refuses to treat MCAS. Someone correct me if I am wrong…
Replies to "You asked for information about testing…this guide helped me…I printed, read it, Filled out forms and..."
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!!!
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@moylandavis thank you so much! 🙏🏻 I really really appreciate this 🌼 blessings for healing always ❤️🩹