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Mast Cell Activation

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

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@kanaazpereira

Welcome to Connect, @antessa. Thanks for sharing the insight; I'm sure @defeatedsteph will appreciate the information. May i ask what brings you to Connect?

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Replies to "Welcome to Connect, @antessa. Thanks for sharing the insight; I'm sure @defeatedsteph will appreciate the information...."

I am 65 years old and have basically been undiagnosed since 14 years old . I have had my DNA done ...and through an ad dropped on my messenger feed I THINK I may have found out what I have but it is hard to suggest anything to a doctor as they do not respond well to ones findings. So a readers digest version ....had tachycardia since puberty ( hormone induced I suspect) I had a miscarriage at 21 , gall bladder removed at 30 , carcinoid syndrome and tumour roved from lung at 55 , diagnosed with rheumatoid , lupus or mixed connective tissue disease at 56 . My daughter and her son also had sudden onset of tachardyia at 14 years of age ...daughter now has EDS and mixed connective tissue disease and grandson has POTS . Ok back to my messenger feed ...I had a ad talking about MCAD ....so I checked my DNA that I had done thro 23 and me. I put in the raw data and this is what came up? Should I show my doctor?

@antessa I would definitely bring this to my doctor's attention. If what you suspect is wrong he should be able to explain the error to you. If not then it should give him good input. Prior to menopause I had horrible migraines. I read everything I could find about them, which in those days was more difficult before it was before we had all of this internet access. I read once that many migraine sufferers know more than a typical doctor and I am sure that is true for many conditions.

I went almost a year and a half with no diagnosis for what turned out to be non-alcoholic cirrhosis. Since having a liver transplant I have learned more and more and realize how many symptoms I had that should have led to a diagnosis. On an appointment with my PCP I asked him if he had cirrhosis patients prior to me. He claimed he had. I then gave him a list of symptoms that point to cirrhosis, all of which I had. He took the list. My husband thought I was terrible to do that but I figured that if it helped some future patient then it was worth it. Going that long not knowing what was wrong with me, particularly since I had HE episodes, was horrible. Cirrhosis is not a great diagnosis but it was better than not knowing.
JK

Thank you I will certainly heed your advice!

I would definitely take that to your doctor asking what it means. Also with your medical history as listed I would look into hereditary alpha Tryptasemia testing. It’s new and thus currently only available out of pocket, but any doctor can order it and I beleive it’s around $160 out of pocket. It’s a new genetic test for a disorder they recently named and it includes a cluster of disorders such as Eds, pots and mast cell disorder or severe allergic reactions