terrytapeworm

terrytapeworm t1_jcpy2dd wrote

It's uplifting that they both survived and that Brady managed to go to nationals only 4 months after getting mauled. It's uplifting that they had only known each other for a few months and Kendell still risked his life for Brady. It's uplifting that Gus and Orrin also put themselves in harm's way to go back and save Kendell, despite being instructed not to by 911. I found the article very uplifting.

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terrytapeworm t1_ix8qd7s wrote

A lot of doctors don't think it's real because there isn't a definitive test for it. IIRC, there are possibly thousands of places on the KIT gene that can have a mutation resulting in MCAS, but they can only test for like 8 of those locations so far. Doctors also don't always consider symptoms a criteria for diagnosis, despite how severe the symptoms are.

If at all possible, I'd go to an allergist. It definitely took me several "second opinions" because I had some doctors try to tell me that I was dying because of "anxiety" and then attempt to give my treatment for fibromyalgia which obviously didn't work.

And it is possible that you could be allergic to certain antihistamines! Medication is one of the top triggers for MCAS. I myself recently switched to a compounding pharmacy to get my meds hand-made because I am allergic to so many things (and it was surprisingly cheaper than regular pharmacies). Also a lot of OTC antihistamines have dyes and gluten in them, which are top triggers. So I wouldn't totally rule it out yet, it's definitely hard to pin down.

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terrytapeworm t1_ix4z5yl wrote

I had this happen with gluten and then, suddenly, a bunch of other foods (sodium phosphates, grapes/apples, natural flavors, almonds, etc.) and my symptoms got worse and worse. Eventually I had extreme high and low blood pressure swings, difficulty breathing, kidney problems, chronic dehydration, my eyes started getting worse, my skin was bright red and painful, every cell in my body was in constant pain, cluster headaches (aka suicide headaches), edema, my teeth essentially disintegrated, I couldn't leave the house if the sun was out or the temp was above 78 degrees without almost passing out and dying, I would also get an enlarged spleen? Or something in that area? Every few days. So basically just any symptom, I had it. Could barely stomach water and definitely shouldn't have been working a physical job.

Turns out, it wasn't actually autoimmune per se. It was MCAS, which means I was actually experiencing anaphylaxis and other serious symptoms any time I came into contact with a trigger (and I was developing new triggers every day).

So aaanyway, and I hope you don't mind me using your comment to spread awareness: If anyone here is being plagued by constant, seemingly-autoimmune symptoms and getting nowhere with endless blood tests and referrals, consider that it may be MCAS. I wouldn't have known that's what I have if someone hadn't commented and said "Hey, that sounds like the disease my sister has," and I was looking up my symptoms every day for 2 years without ever hearing about MCAS, despite having just about every symptom. There's no definitive test for it and doctors constantly use the wrong information (for a similar disease called mastocytosis) to try and test for it, but if you're, like, dying like I was, you could try taking an H1 and H2 over the counter antihistamine and see if it helps with your symptoms, and then use that information to work with your doctor.

Anyway, thanks for giving me a chance to piggyback off of your comment!

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