LogFAQs > #946188434

It's kind of hard to be sure honestly. I have a theory but both MCAS and my neck issue are super rare and not well understood so annoyingly there aren't really any doctors that can just tell me whats going on.

So first I need to explain MCAS (mast cell activation syndrome). It's a rare group of conditions where mast cells just don't work right. Mast cells are essentially your allergy cells and they work kinda like land mines. When they work correctly, coming into contact with certain things causes them to basically fall apart, releasing a bunch of chemicals useful for healing (this process is called degranulating). Most notably histamine and cytokines but there are other chemicals too. These cause inflamation. Mast cells also have histamine receptors so it can cause a bit of a chain reaction. Some degranulate which releases histamine which hits other ones causing them to degranulate.

MCAS means they are degranulating when they shouldn't. Typically this is because they are hyperreactive so if normally it'd need to fill like 20 receptors with histamine, mine might only need 2 receptors filled. It's also possible for them to be unstable and just fall apart from nothing sometimes which at high enough levels will cause enough histamine to be released to start a bit of a chain reaction. They don't currently know why this happens although theres lots of reports of people getting this after recovering from covid so hopefully that brings more awareness and research.

Usually MCAS results in anaphylaxis type symptoms but there is a lot of variety and it can cause gut problems or brain problems or really anything problems. It generally results in intolerance to a lot of foods and substances even in extremely small amounts. My symptoms are atypical and seem to mostly affect the gut and brain.

The other rare condition I have is technically 2 conditions. CCI and AAI. It's a lot more simple. The top two discs of my spine are very degenrated causing those vertibrea to be unstable. This frequently causes them to put pressure on the spinal cord and brainstem.

Theres a fair amount of people with MCAS, connective tissue disorders (most commonly EDS), and CCI/AAI. It seems likely that the extra inflamation from the MCAS is causing the connective tissue in the body, in this case the spine, to get inflamed and degrade much faster than they should.

This impacts the nervous system and gives people dysautonomia which in turn causes the bodies regulation to be worse, which results in less stable mast cells and then more inflamation and it's just a vicious cycle. Typically, it's not deadly, but it can be extremely debilitating and people can die from anaphylaxis or falls from dysautonomia.

My cases seem to have an especially synergistic effect on food intolerance where eating triggers mast cells which causes swelling that further impinges on my spinal cord/brainstem which makes me lose control of my body, start convulsing, and just generally feel like I'm about to die. It's the exact symptoms of brain swelling which is what I'm worried is the cause. Brain swelling isn't typically from anything this temporary though and generally is not detectable on tests like MRIs unless they happen to take one when I have the swelling and even then it might just barely show up if it at all. Of course, I could get similar symptoms if it was just disrupting my nervous system more harmlessly.

It's very frustrating. I get these super terrifying attacks and they might be harmless OR I might be on death's door and incurring brain damage and theres just no way to tell unless I happen to die from it or they invent some better tests. I've thought "these are my final few seconds" so many times over the last year while convulsing and crying.

To make it worse, no one seems to understand MCAS or have even heard of it so when I'm at the hospital, they have no idea how to treat me, because I react to basically every medicine. All they can really do is watch and give me epi if I get anaphalaxis or try and resuscitate me if I die.

However, thats obviously only some of what I mentioned. The rest is more recent but it's mostly because of my diet. Due to MCAS I react to every food. The one I react to by far the least is brown rice. Everything else destroys me. I add a few drops of oil or butter to the brown rice? Convulsing on deaths door. I take a sip of orange juice? Death's door. I take 1/10th dose of pain meds? Deaths door. Ensure, or vegetables, or meats, or sugars, or anything else thats not brown rice or water? Deaths door. Well ok actually bananas aren't quite as bad as everything else. They make me feel bad but less so than most other foods.

Brown rice does not have many calories and is obviously devoid of some nutrients. To compensate somewhat, I eat 6 meals of it a day (resulting in about 1600 calories) and take a multivitamin. The multivitamin messes me up a bit but I'm taking only 1/3rd the daily dose so I've been able to manage it. This has been going on for 17 months and I've lost 96 lbs from it. I'm currently 119 lbs, 6 ft, male. Being malnourished to this degree has really taken a tole on my health and it led to me getting first a mouth infection, then somehow salmonella, then a boil that might be from MRSA all within like a month. In addition to that, my liver enzymes spiked up a ton (to about 16x the normal upper limit). The weird thing is, I've had basically all the tests for viral and autoimmune hepatitis and theres nothing reasonable that could be causing toxic hepatitis. My GI said he has never seen something like this and that he has no idea what to do.

Fortunately, as of tuesday they had stopped rising at least so hopefully whatever caused it is getting better. They want me to take antibiotics for the other infections but I'm a bit worried. Antibiotics fuck me up BAD because of MCAS. When I had the mouth infection, I tried 3 different antibiotics and they all fucked me up.

I've been in the ER twice in the last few weeks and the second time they found a gallstone and previously my gallbladder hadn't been ejecting bile as well as it should. I did find a case of unusual presentation of hepatitis from common bile duct minor obstruction so currently thats my best guess for the hepatitis.

Oh, I also lost the ability to sweat when this all started.

I didn't mention omeprazole. Early on I had hemorrhagic gastritis and esopagitis they found during a endoscopy. They put me on omeprazole to lower stomach acid and heal it. It worked and they told me to keep taking it. Sadly, this is an evil med and fucks you up if you stay on it. Trying to quit causes SEVERE rebound acid. This mixed with my lack of ability to sweat and other symptoms makes me feel neuropathic heat all over when I get heartburn. It's awful. My whole body is just in an icyhot hell. I've determined to get off of it though because it's really bad for you so I'm trying to taper down after failing to quit cold turkey.

None of the docs gave a shit for the first year or so and kept telling me it was all in my head. Me and mom did tons of research though and that led us to seeking out other doctors to interpret my MRIs and then get a digital motion x-ray which confirmed the CCI and AAI. We were insistent about getting me tested for MCAS but annoyingly the only specialist in the state is ultra backed up so it took us like a whole year to see him and then a while for the testing (which is just a 24 hour urine collection I could have done literally day 1 and I'd be fine by now).

Now that I'm on death's door from being malnourished they suddenly care but it's made my condition incredibly difficult to deal with. They all tell me to go to mayo but I can't afford it. Still, if I can just get to where I can eat, I should recover quite a bit.

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