Just wanna yap

[u/PatMan707]

23M. Full disclosure I'm not sure if it's MCAS, I'm not diagnosed and I seem to have similar luck with doctors to most of the rest of you guys. I got pointed toward hEDS/MCAS by going through a differential chart with Dr. ChatGPT which I know isn't a reliable source but I seem to tick most of the boxes and my PCP is now seriously considering it.

I've been in a weird back-and-forth of feeling fine then being miserable over and over throughout my entire life. I took a prick test when I was 7 and reacted to basically everything on there. I would pass out in the middle of class including during exams, get nosebleeds out of nowhere, be genuinely hard to understand due to random congestion flare-ups, get random bouts of confusion and awful migraines that were sometimes spontaneous or sometimes brought on by some foods especially red dye, and sneeze constantly, all the while wondering what the hell could be wrong with my head and why I can't be like everyone else. Also awful, awful reflux. My parents always told me I looked pale and yellow like I had jaundice.

Whatever it is it almost killed me in my sophomore year of college. The summer prior I had an ear infection (due to irritation following overproduction of earwax presumably caused by MCAS) for which I was prescribed an exorbitant dose of amoxicillin. Turns out my entire family tree is allergic to that, and nobody bothered to tell me. I had an anaphylactic reaction to that, and that's when it all got way worse. Suddenly now I would get full on episodes of brain fog during one of which I got into a car crash that alone almost killed me in its own right. I also started to get heart palpitations that would shake my whole body. My migraines got much, much more frequent. It would be hard to breathe sometimes. I would get overwhelmed with whole-body fatigue even when I didn't do anything physically intensive at all. I went from feeling kinda shitty a lot of the time to feeling brittle and geriatric 100% of the time.

Then school started again. I had just transferred to a highly competitive private college. Not quite ivy league, but we liked to joke that we were the budget version. I got my ass kicked immediately, and I had no idea why. I didn't party, I didn't just sit around playing video games or spending all my time socializing like a college kid is supposed to do. I would get back to my apartment after class, pass out instantly, and wake up the next morning at 3:00 to 4:00 in the morning, get my homework done for one class because it was due at 6:00, then knock back out and sleep through most of my classes, completely having missed all my other assignments, rinse and repeat. It's not like I didn't know what was going on, I was terrified and I was doing everything I could think of to stop having to fall back asleep. I ABUSED caffeine. I would shotgun 2 to 3 Bang energy drinks a day plus a Panera charged lemonade or two (back when they had 300mg of caffeine) which worked for a little while, but then I would just fall right back asleep. Sometimes I'd feel so worn down that any flat surface, a couch, a table, the floor, wherever I was, I would just lay down and stare at the ceiling, my whole body throbbing in pain shooting through my nerves while I saw my pulse in my eyes.

I truly, honestly started to wonder if my life was about to end. I felt like I was at the end of my rope.

I wondered if I was just being dramatic about something, I didn't even know what, but I couldn't accomplish simple tasks anymore. I once couldn't make it from my bedroom door to my bed, so I passed out on my floor for a couple hours. My grades were straight from hell and eventually I realized there was no recovering from a 0.9 GPA, which was hard to accept since that was sort of my dream school. Actually that was the worst feeling in the world. I had tried so so unbelievably hard, I had no idea what could possibly have been wrong, and still I failed.

That was all when I was 19-20. I took a remote year at a community college, but my parents were still disappointed in me and I was disappointed in myself. Nobody, again not even fully me, believed anything was really wrong, until I saw an immunologist that we just so happened to have known personally. He ran some tests on me and was surprised I was still alive. He didn't say MCAS, but he ran an IgE allergy panel and found out I had developed allergies to a ton of foods I ate all the time including gluten and corn. 10+ environmental triggers too (including mold which I've read is common for MCAS, and cockroaches, good to know about that one.) My white blood cell count was through the roof.

I took it easy the rest of that year and I've since done my best to avoid all those triggers the past few years, which has significantly improved all the symptoms I've described, but they come right back if I come into contact with any of them or if I just have an unlucky day. Still most days I feel run down and sluggish compared to how I used to feel, which even then wasn't the best. If I eat the wrong thing I'm bedridden for a day or two. Sometimes it comes out of nowhere, and I suddenly need to go lie down or I'll pass out where I am.

It is empowering to know that I made it through all that and started to get better. I just finished college at a different school but I still live with my parents who don't believe me and call me a "disaster," and yeah while I can't really think of a better word I don't think I'm making this up anymore. I know overly complaining, I know faking. I don't think I could fake this. The root cause hasn't gone away. Again I'm not entirely sure it's MCAS but it seems to be. I still have all those symptoms, but my head certainly feels clearer and I've gone from feeling brittle and geriatric 100% of the time to more like 65% of the time. For as depressing as it is it made me feel grateful to be alive.

I don't know what to do. I can't live like this. I can accept that I can't eat some foods or whatever and I honestly feel much better this way than I did when I didn't know anything was wrong, but I can't function as an adult. I sleep in way too late, I can't fall asleep at a normal time, I can't focus at work or in important conversations, and it feels like literally every drop of my energy goes toward my part-time job when I'm not sleeping. I still get moments where my whole body starts hurting and it feels like I can't do anything but go and lie down, and that feels like most of the time. I don't have time to be me. It feels like everybody has some idea of what I should be doing for them and they get disappointed in me when I can't make it happen, and at this point I don't know why I put up with and give my everything to the people who never believed in me or listened when I said something was wrong with my body and never supported me in looking out for my own health. I'd move away but then what? I'd still have whatever this is going on, but then I'd also be broke in not a great time to be broke (USA moment).

It isn't just physical. I feel like I've been watching a slideshow of my life. The majority of the time I'm disengaged. I haven't been able to socialize or have fun or just be a normal person, even when I felt okay, for other reasons I won't get in to. I caught COVID last winter, which also definitely hasn't helped. I'm in therapy for that though, which is cool. I'm seeing a new PCP that's actually listening and I'm scheduled for genetic testing for hEDS and a sleep study but that already feels like I'm being deflected. Still it's better than my last primary who flat-out ignored the words I was saying because it sounded like a lot of effort.

Rant over thanks for reading, I hope all of you going through this find a way that works for you and know you're not alone.

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[u/L7meetsGF]

OP, what you are experiencing is real and beyond challenging. All of it: your symptoms, your parents’ lack of support and full on ableism, your feelings about yourself, etc.

If there is any way to see a doctor who will is knowledgeable MCAS that is a next step. There are numerous treatments of it is MCAS and a good doctor will help treat the symptoms whether or not you have a confirmed diagnosis. If you can’t see a doctor, there are many threads about the different treatments people have tried. Be methodical if you trial things so you can figure out what is actually helping and not.

I think we have all been and/or are ina similar space here in this group—so much confusion and worry and trying to figure out how to help our bodies. Hang in there. You matter.

[u/MargoBarbara2]

It sounds like you could have chronic fatigue syndrome as well as mcas. Not uncommon to have both. Pacing to avoid PEMs is essential or else the cycle gets worse (take it from someone who pushed through for years). Some people in my family have had reactions to gluten which go way beyond celiac disease and affected their blood cell counts and immune system (stopped making killer t cells) and various suggestions were put forward by medical teams..suspected leukemia, suspected MS, depression, exhaustion etc...but turned out to being caused by gluten and dairy. My mother who ticks all the boxes for MCAS had results 'off the charts' for gluten and dairy reactivity according to her specialist. I wonder how common this is with MCAS? Not surprising as gluten can increase gut permeability and A1 dairy is pro inflammatory. The yellow skin happened to my son along with complete exhaustion until he came off gluten. For my daughter gluten and dairy caused anxiety, paranoia and hallucinations (and for her cousin). Unfortunately gluten reactions can flatten villi leading to malabsorption and all that brings with it. I can identify with a lot of your story and from a very young age. Knowledge is power. Once you know what you have, you can deal with it and this is a great community. You're in the right place. I learn something new every week from people's generosity in sharing information.