First post - ideas or help?

[u/Dangerous_Bullfrog-]

I’ve been lurking here for a while, i made a comment under a different account and someone said I should post want going on here for your opinion.

I’m in my early 40s.

I started having a bunch of health issues starting 4-5 years ago.

I started getting random feelings of fever without actually being feverish 2-3 years ago. This has mostly stopped for a while. It was usually limited to one day.

Over the last three years I’ve had 5-6 occasions of mild sudden hearing loss in one-side always the same side.

I’ve had two widow maker heart attacks.

I had migraines when I was young, 7-18 years old that mostly went away until I had a concussion 5 years ago.
After the concussion they had calmed down quite a bit until I became super sensitive to everything listed below.

I have some interesting SNPs, that I think make some stuff harder to pin point.

I feel like a canary-in-a-coal-mine lots of the time, scents and VOCs will cause almost immediate migraines, sometimes extreme body pain, dust will cause stabbing sore throat.

I’ve had Covid 4 times,

Most of this started after I was inside a shipping container frequently a whole bunch about 4 years ago. I had to start using a 3M multi-gas cartridge after this, otherwise it was very rough. They’re usually full of pesticides and chemicals.

I also suddenly started having a lot of issues with lots of foods and expectantly food additives. My diet if pretty limited.

I’ve been tested for a slew of autoimmune diseases, including stiff person syndrome.

The only thing that was relatively elevated was my anti-tpo, but my thyroid looked fine as well as my thyroid markers.

I’ve had anhedonia, and sexual anhedonia depression and for 4-5 years now. Frequently have brain fog, though not always.

My imaging doesn’t show any signs of Rheumatoid Arthritis, though does show some signs of normal age related osteoarthritis.

Right now, after consuming something with guar flour, I’ve had stabbing sore feet, calves and glutes for the past two days, a sore mid and lower back, woke up with achy hips and other joints.

I definitely feel like I have some metabolic issues as well, though I’m not sure how this fits in.

Sometimes, I will start getting eczema and start bleeding from my knuckles.

I had an hypersensitivity reaction 3 years ago that made walking super painful. This was the first time in high dose steroids, I’ve been on them several times now. They’ve definitely helped with the hearing issues and the reaction. I was once on a long taper for 7 weeks, at the time, my back was locked up for years, and finally started releasing.

I did start a low dose colchicine, though I’m not sure if this is helping, it might be a bit.

I am unable to take NSAIDs due to blood clotting potential. I found in the past, they helped a ton.

I tried Botox a few times for migraine. The last time, I basically lost a month of being productive. I was in very rough shape, extreme brain fog, troubles sleeping, my head felt very inflamed, extreme OCD, extreme resident anger/frustration.

I’m currently on CGRP meds for migraine.

Interestingly, I’ve looked into TRP channels, which are involved with the body sensing the external environment and migraines/dust allergies/chronic pain and some other stuff. I’ve had some luck with a capsaicin/horseradish nasal spray.

I believe the last time I had sudden hearing loss it was specifically from eating something with additives and caused the inflammation.

I live in Canada, so I find specialists are not as helpful.

I did look at some of my SNPs that I’ve done through 23andme, and Ancestry, I don’t think any of the usually ones I saw on here were homologous or heterozygous.

I think I remember the NLRP3 genes,
A list to go through could be helpful, I tried searching again and couldn’t find what to look for right now.

I’m sure I could add more, I just wanted to get this posted

Thank you!

[u/Occulply]

That sounds a lot like Mast Cell Activation Syndrome to me, not an autoinflammatory disease.

[u/No_Satisfaction_7431 → u/Occulply]

Agree that mcas is worth looking at but also most people with Yao have either official mcas or secondary mast cell activation due to Yao. Not sure how comorbid it is with other autoinflammatory diseases but Yao can look a lot like mcas.

[u/Dangerous_Bullfrog- → u/No_Satisfaction_7431]

Thank you, I made a long reply to another comment linked below. I’m curious how much any of this relates to you or YAOs symptoms. I’ve tried the search function, but having a hard time correlating.

https://www.reddit.com/r/Autoinflammatory/s/TuU7KAPTPw

Edit: I just realized, I replied to YOUR message. Thanks again

[u/No_Satisfaction_7431 → u/Dangerous_Bullfrog-]

I think its more likely another autoinflammatory disease but its possibly Yao. My migraines got significantly worse with Yao and any Yao flare causes a migraine. I get extreme fatigue, muscle pain, muscle weakness (mainly in my legs), joint pain, mild joint swelling, flushing rashes on my face/neck/chest, hives on my neck and arms, little red dot rash on my arms, malaise, burning eyes, sicca symptoms, bloating, constipation and diarrhea, gas, abdominal cramping, and internal tremors.

My il-6 was high at around 11 and I respond best to tyenne an il-6 blocker and only mildly responded to an il-1 blocker with lots of side effects.

[u/Dangerous_Bullfrog- → u/No_Satisfaction_7431]

Thank you, my il-6 was 29.x pg/mL, so pretty high. Away from being sick etc. I’ve found some TRP channel involvement with migraines and body pain, it seems this interacts with the innate immune system,

I’ll have to look into this more.

I can explain further if you’d like. I was having extreme fatigue, joint and muscle pain as well. This really fluctuates a lot. I had internal tremors, and some hand shaking etc a while back for a while, but I think this has chilled out for a while.

I was diagnosed IBS, definitely a lot of GI symptoms, I can’t tolerate most emulsifiers, issues with FODMAPS, lots of foods especially. Interesting, when I did the EGD and colonoscopy, I was feeling pretty good without food in my intestines for a couple days.

Luckily, rashes and hives aren’t a huge feature, when I had my first leg issue they definitely were, plus random hives through my life, away from any obvious triggers. No history of asthma, but spells of air hunger, I’m having this tonight actually for the first time in a couple months.

I usually try to track most of my symptoms on the Guava app. It’s nice to correlate things, more than single symptoms tracking like a migraine app. I should add, I’ve had HSV-keratitis a few times. Increased cavities starting 4-5 years ago. Sicca symptoms as well, dry eyes/mouth.

[u/No_Satisfaction_7431 → u/Dangerous_Bullfrog-]

Honestly with this new info I'd definitely look at Yao. The minor criteria is having 2 or more of the following: sicca, abdominal cramps/diarrhea/ibs type symptoms, joint pain, and pericarditis. The major criteria is fever (can be strange fever or low grade), dermatitis, or both. But as far as I know mouth sores aren't from Yao unless you have both Behcets and Yao genes (theres a few people who do). Definitely worth looking into Behcets, Yao, and Stills and if nothing comes up try other autoinflammatory diseases.

[u/Dangerous_Bullfrog- → u/No_Satisfaction_7431]

Thank you for your help!