Mast Cell Activation

Hi, good morning all. I have MCAS , post long Covid or vaccine injury... regardless I have it. It's really troubling me right now. My nose is a faucet, my body hurts, my stomach hurts - I feel like I have a flu. So, what to do...I came here for support, offer support, info, Intel lol.
I am receiving IVIG monthly treatments and that was really helping and felt like it went away for a while, but I am as of late feeling like I have had long Covid for the 3rd time and big MCAS. I do have epinephrine shots, but all they do is open my chest, dry my nose, make me sleepy lol. Crazy writing about it. I don't know how I get by, good sense of humor 😜 I guess. Nothing really has worked well for me and I am just so sick and tired of spending my days in doctor's offices. I had to go to my primary, urgent care, ER, dermatologist before finally getting diagnosed with onset of a strange eczema that developed into infected impetigo. Ughh, I just want to put my head in my pillow and scream and cry. Because, just seems ridiculous sometimes. And to all of those Dr's previous to the dermatologist who put me on Doxycycline, I explained that I have discitis with gas in my spine from all my new 4 autoimmune diseases, inflammation. I've already had an infection and almost died etc...crickets, gaslighting. sorry, not very supportive today. Honestly, I'm exhausted and moving and will be living alone so I can be sick and do me.

I pray you get the proper medical care very soon🙏🏻 hang in there!

What’s the fb page called?

Can you tell me where you ended up getting treated in MN? I can’t find anyone

I don't do social media. My husband and I shut down all of that before we were married. There seemed to be no shortage of freaks and stalkers on FB for one reason only. I guess I don't need to say what that is. Anyway, I'm replying here instead of starting a new thread. I just need to vent and hope to connect with others sharing my struggles. I have MCAS, H-EDS, POTS, laryngospasm, insomnia, IBS, migraines, salicylate allergy, chemical intolerance, intensely painful and chronic back/rhomboid spasms (supposedly from a pinched nerve), however they only get horrific after I eat ANYTHING. I currently have zero foods that I don't react to with muscle spasms and shortness of breath. I take 6mg daily of Ketotifen, Xyzal and Benadryl twice daily. I can no longer take natural remedies like Quercetin and Luteolin because I also have a severe salicylate allergy. I have anaphylaxis routinely, despite living on about half a dozen or so vegetables, three meats and no fruits. Xolair helped a very little bit but wiped me out for a week with unbearable fatigue. I couldn't get out of bed for a week. I have begun reacting to every lotion, body or cooking oil, deodorant and basically anything with chemicals in it. I have no life, live in near constant and severe pain and spend most of my time in bed. I don't have the milder issues like diarrhea, runny nose, swollen or itchy eyes or rashes very often. I have more life threatening, systemic problems including anaphylactoid episodes and anaphylaxis. I go from zero to bottoming out BP and shortness of breath, quickly followed by my throat closing. Often I manage by quickly chewing up a few Benadryl tablets and using my inhaler but anaphylaxis does happen too. I have an appointment next month with a doctor nearby who supposedly is experienced with MCAS patients. I was traveling hours to see one until I became to sick to do so. I've experienced gas lighting and doctors who get tired of dealing with my "complexities." How can something that affects so many have so few specialists and no FDA approved treatments? Everything has to be compounded and it seems like most PCP's know so very little about MCAS. I shudder to think of what would happen if I needed emergency care after an accident and couldn't speak for myself. I am so sick and so frustrated.

Thank you for reading this.