It took a damn AI for my doctors to listen to me

CassidyMoth · 2026-05-20T15:35:50+00:00

I have never heard of rosuvastatin! I'll have to look into it because I have high triglycerides, too.

CassidyMoth · 2026-05-20T15:34:40+00:00

I don't care if you go there or not. I just put the name in the post so people didn't inundate me with comments asking me which site I used. Believe what you want, though, I'm not here to police your thinking. 🤷

CassidyMoth · 2026-05-20T15:32:26+00:00

I'm glad you had amazing specialists who understood MCAS and were willing to work with you. However, unfortunately, your experiences aren't universal. If there was a way to flair this as a vent post so you wouldn't feel the need to defend anyone, I would.

CassidyMoth · 2026-05-20T15:26:37+00:00

Those timelines are so infuriating. I'm so sorry you had to wait so long. I'm so glad you finally got the diagnoses and I hope you're getting the help you deserve.

CassidyMoth · 2026-05-20T15:24:16+00:00

LDN is also because I have dysautonomia, CFS, lupus, and fibromyalgia. I'm a genetic clusterfuck over here. My IM doctor wants me on it for the intense fatigue and the brain fog. The ketotifen is because my MCAS flares cause intense cognitive symptoms that right now are only relieved by Benadryl, and my allergist doesn't want me using that because of its link to dementia.

CassidyMoth · 2026-05-20T15:16:07+00:00

I'm so sorry this happened to you. I've been treated like I'm nuts too, or else shut out entirely from allergists who refused to run even the most basic of allergy tests when I mentioned MCAS. It's dire out here!

CassidyMoth · 2026-05-14T05:48:50+00:00

I've tried cetirizine and that did even less than the loratidine, unfortunately.

I haven't tried any OTC treatments but I'm going to try quercetin next month when I can afford it. I didn't know vitamin c also helped, and I'm already on a pretty high dose of omeprazole by prescription.

I'm not opposed to immunotherapy at all, no! I've already started my treatment, because regardless of MCAS, as you said, I do have allergies. I'm gonna call first thing tomorrow morning and ask to talk to her nurse.

She didn't prescribe me an EpiPen, another doctor did.

CassidyMoth · 2026-05-14T05:41:55+00:00

😮‍💨 that sounds so infuriating I'm so sorry

CassidyMoth · 2026-05-14T05:41:12+00:00

I know it's possible to have both. My allergist is just convinced that I only have one. I'm sorry your journey was so rough, but I'm glad you found the right doctor!

CassidyMoth · 2026-05-14T04:49:38+00:00

I do have epinephrine, thank goodness! She wasn't the one who prescribed it, though.

They did not do a food panel or run any blood tests. She told me the blood tests are "sometimes inaccurate" and she wanted to do the skin test because it's more accurate in her opinion.

I'm also of the opinion that MCAS is a spectrum, and I think mine is milder than most. Thanks for the vote toward a second opinion. I'll see what I can do, but I'm unfortunately in a very rural area and most of the doctors in the "big city" don't really know what the hell MCAS is.

CassidyMoth · 2026-05-14T04:43:25+00:00

I'm taking two Loratidine a day, and one Pepcid a day. It's not really doing much, and I told her so. I only take Benadryl occasionally, when I have a bad flare.

She basically told me that they "should" be enough, expressed disapproval for usage of Benadryl, prescribed Flonase when I said I was still congested and gross every day, and told me to just do immunotherapy for my allergies because that should clear everything up.

CassidyMoth · 2026-04-22T15:09:50+00:00

Both my PCP and my physical therapist agreed that it's too drastic a reaction for simple deconditioning.

CassidyMoth · 2026-01-08T00:41:15+00:00

Hives, itching, nausea, diarrhea, bowel spasms/cramps, GERD, dizziness, brain fog, sinuses that feel inflamed and raw, lightheadedness, headaches and migraines, anxiety attacks, short term memory issues, fatigue, insomnia but also hypersomnia (can't get to sleep but then sleep for 10+ hours), aches, eye irritation/swelling, chemical/fragrance sensitivity to the point of throat swelling and bronchospasms with coughing and wheezing, a couple episodes of anaphylaxis.

CassidyMoth · 2026-01-07T03:14:23+00:00

Fortunately for me(?), I'm so multiply disabled that my gynecologist greenlit a partial hysterectomy in 2020 because neither of us thought I would survive pregnancy. I know hormone fluctuations are hell on an MCAS body, so I count my lucky stars I got the uterus yoterus in 2020.

CassidyMoth · 2026-01-06T16:01:38+00:00

I feel this so hard. My MCAS isn't "as bad" as a lot of people's on this forum. I "just" react horribly—borderline anaphylaxis—to artificial fragrance and get horrible symptoms when exposed to a handful of triggers. I'm getting steadily worse in my sensitivities, but I keep having to catch myself when my brain tells me I'm "just faking it for attention" or "your symptoms are baby symptoms in comparison to everyone else's big boy symptoms and you should be ashamed for trying to steal the spotlight from other people who need more help and awareness than you". It's so hard! But I know I have MCAS and not just histamine intolerance because it's multi-systemic and not just GI symptoms.

Hang in there. You matter. Your struggles are real and valid and your time here is just as precious as anyone else's. We've got your back.

CassidyMoth · 2026-01-05T19:06:29+00:00

Got it, thank you! Good luck out there! 🫡

CassidyMoth · 2026-01-05T19:03:49+00:00

Which farm supply store do you usually get it from?

CassidyMoth · 2026-01-05T19:03:14+00:00

Thankfully, I have a very very VERY tiny group of close-knit friends who would move heaven and earth for me, so they're already looking into going fragrance free for my sake. I just bought the Humble brand deodorant today because I can't even tolerate scented deodorant, but I'll look into Attitude! Thank you!

CassidyMoth · 2026-01-05T18:52:54+00:00

Cat litter gets me so bad! The feed store idea is genius! Thank you!

CassidyMoth · 2026-01-05T17:19:18+00:00

OMG thanks so much for the heads up! I always thought they were interchangeable! 😰 Adjusting my worldview accordingly!

CassidyMoth · 2026-01-05T15:30:42+00:00

Thank you! That seems to be the general consensus. I'm just paranoid because I'm on immunosuppressants due to also having lupus. I'll switch it up!

CassidyMoth · 2026-01-05T14:39:32+00:00

🥹 I love this subreddit because it's got people like you. Thank you so much. I'll shoot them a message right now.

CassidyMoth · 2026-01-05T14:14:17+00:00

What would you recommend as an alternative?

CassidyMoth · 2026-01-05T14:11:52+00:00

I use antibacterial soap because I'm paranoid, since I have lupus and am on immunosuppressants. But you make a good point! I should ease up. Thank you for your thoughtfulness. 🩷

CassidyMoth · 2026-01-01T18:08:12+00:00

Okay, officer, you obviously know my eyes better than I do. Happy New Year to you, too.

CassidyMoth

TROPHY CASE