Hi. First post, think I have MCAS, feeling overwhelmed

[Penwiggle]

Hi everyone,

Brief backstory. (OK, turned out to not be that brief, sorry)

I'm 55, female living in the UK. I discovered I was allergic to penicillin when I was 10 years old, and then several other anti-biotics over the years. Occasional hay fever, but nothing major. Taking antihistamines a handful of times a year usually sorted it.

July 2019, I started having allergic reactions to something. Over the course of a couple months, they went from slowly developing hives, rash & itchy skin to anaphylaxis reactions in <10 minutes after eating the trigger food. Several A&E trips later I finally got seen at Addenbrooke's, did the pin-prick test and got the t-shirt. Allergies it flagged up were pretty much everything apart from pistachios and cashews. Peanuts, tree nuts, cats, mould, house dust, grass/shrubs, yada yada.

My cat moved out and moved in with my son, and I super cleaned my house. My migraines instantly dropped from 7 a week to <3 a week. I have chronic daily headaches, chronic migraines and cluster headaches, so didn't realize at least some of my migraines were linked to my cat till he moved out. Hard to tell headache triggers sometimes when you have so many as a baseline (I average 20-30 headaches/migraines a month). A migraine trigger has always been strong scents, sudden cold and other things like that, which I'm learning are also mast cell triggers. So, that's fun.

Since my Addenbrooke's appointment one year ago, I've added a few things to my allergy trigger list - apples, watermelon, strawberries, and most recently, alcohol. The weird thing is that I can eat something one day and be fine, but eat it again a few days later and have a reaction, then when I have it again, I'll be fine. Which didn't jive in my head if it was an allergy. But reading up on MCAS, this makes sense. In the middle of my really bad reactions in Aug 2019, I ate a peanut butter sandwich and had zero reaction. I also had some peanuts that same week. But a week previous I was in hospital for eating peanuts. This was before I got tested.

Several years ago I noticed what looked like freckles forming on the tops of my feet. Didn't think much of it, thought it was part of getting old. Looking back, they appeared not long after I got my cat, and now my cat has been out of the house for a year, they are all but faded. Almost completely clear skin now.

Addenbrooke's discharged me back in May 2020 after a 15 minute phone call where the doctor mostly answered my questions and decided they could be of no further help. I had allergies, just deal with it.

So when I went back to my GP yesterday, asking for a new referral, he pushed back, asking if Addenbrooke's had explored MCAS last time. So now I'm trying to just get an appointment with someone so I can get a diagnosis.

I know my body. I know something is going on here besides just run of the mill late-onset allergies. It is too weird and too random. Every meal I eat I wonder if I'm going to have a reaction. Sure, that food was fine yesterday, but it could kill me today.

I have bad insomnia too, seldom falling asleep before 3am. It's been getting worse in recent years. (pro-bonus, lack of sleep is one of my migraine triggers)

I will badger my GP until I get a referral. Although not 100% sure I want to go back to Addenbrooke's, if they didn't consider MCAS the last time I was there, are they going to do a better job this time? If I can even get them to take me seriously. I feel lost, angry & very alone right now.

Thanks for listening.

Pen

[Merkat90]

Hi penwiggle

I have mcas mast cell activation syndrome

This does sound possible if u in uk the only doctor that treat this are a private one I am afraid.

[Penwiggle in reply to Merkat90]

Oh, typical, and that explains why Addenbrooke's didn't diagnose it. Thanks, I've got more research to do. sigh.

[Merkat90 in reply to Penwiggle]

Sometimes I wish had something different just so got correct treatment and on nhs.even now under a specialist I not got correct treatment. 😭😭

[happytulip in reply to Penwiggle]

I'm being treated for MCAS at that hospital

[Jess-UKMasto Partner]

Hi Pen,

I'm sorry for the situation you're in where you've gotten a partial diagnosis! Your reactions do certainly sounds like your mast cells are involved (which they would be in food and environmental allergies). The question is, of course, whether the mast cells are being triggered inappropriately, which is what we understand to be happening in MCAS (though we don't understand yet why).

There are some NHS doctors who do treat MCAS patients, whether they call it MCAS or they don't. If you pop me an email at [e-mail] we can discuss that. The charity called Mast Cell Action also provides some help in trying to identify doctors who might be suitable as well.

Very best wishes,

Jess