If you follow my Facebook page, you may have already seen the news…
Yesterday I was diagnosed with something called mast cell activation syndrome.
It’s taken me a long time to figure out what’s been going on. It all started with a severe allergic reaction back in August.
Unlike most people who experience a severe allergic reaction and then (assuming, hopefully, they were able to get the proper treatment in time) recover from that one episode, for me, that incident seems to have set off a chain reaction where my body is becoming more sensitive to triggers, over time.
It’s kind of similar to central sensitization, actually. Both our nervous system’s ability to send pain signals, and our immune system’s chemical messengers, are there to protect us.
However, in both cases, the two processes have gone overboard. In central sensitization, the nervous system becomes more “effective” at sensing pain.
And in what I have, mast cell activation syndrome, my body’s mast cells, which I need to release histamine during an allergic reaction, are not able to calm down afterwards.
I’m still learning about this condition — I went to see the specialist yesterday hoping to find out I didn’t have it.
But I do. The more I read about, and patient stories I hear, the more I know I do.
Essentially, my mast cells are still releasing high levels of histamine, even though the initial reaction that triggered them was over a month ago.
Having high levels of histamine can trigger a wide range of symptoms. The more minor are itchy skin and rashes. At the other end of the spectrum are all of the symptoms of a severe allergic reaction, including airway swelling and a dangerous drop in blood pressure (these life-threatening symptoms are part of an extreme reaction called anaphylaxis).
I now have an epipen which I expect I’ll have to carry with me everywhere for the rest of my life. I guess it’s similar to living with a food allergy — except, to my knowledge, I don’t have any food allergies.
MCAS is scary in it’s own right, though, because the triggers can be impossible to predict. The same thing can be fine one day, and trigger a reaction the next.
From the reading I’ve done so far, it seems like many sufferers have to keep a running tally of all the activities they perform, and foods they eat, which could cause a rise in histamine levels. It’s possible that although a food or activity on it’s own could be benign, if you add them together the body reacts.
That’s another thing. Intuitively, I had decided not to exercise at all since this happened. I’d learned, when I considered allergy shots last year, that exercise can trigger anaphylaxis.
The new allergist I saw yesterday confirmed that my hunch was correct, and asked me to continue not exercising for the time being (we’ll see what kind of effect this has on my SI joints!).
As devastated as I am to receive this diagnosis, at least the doctor yesterday validated much of my experience.
I had known, instinctively, that my body just needs to calm down right now. That I shouldn’t exercise, and that I need to avoid contact with my allergens.
I have certainly had emergency room staff be rude to me when they didn’t understand my symptoms.
I told my new allergist yesterday about some of the things people had said, and she rolled her eyes and said “That’s so stupid.”
So… I’m not happy to receive this diagnosis. But… the problem was already happening. At least now I know what it is. My allergist thinks MCAS is behind many of the extreme allergies I’ve had, even before this, and I think she is probably right.
So… it is life-threatening. The degree to which it will impact my life, on a day to day basis, is still unknown.
Anyone who knows my story knows I really, really didn’t need one more complex health issue to write about.
But I’ll do what I always do. Keep researching, keep writing, and keep moving forward.
I hope you are all doing well.
For more on MCAS: