Mastocytosis
I’m sure there is a more elegant and scientifically correct way of explaining Mastocytosis, but here is what I tell people when they ask:
My body produces too many mast cells. Mast cells are the cells that produce histamines. So basically, I have way too much histamine in my system at any given time. Plus, the cells are slightly deformed so my body doesn’t know how to kill them off. So not only do I produce too many but they keep building up. There are two forms of Masto; luckily I have the more benign form. The other kind, when Masto was first discovered, got people a four-year life prognosis. They have to carry epipens at all times, because they can go into spontaneous anaphylactic shock for no reason and sometimes the Masto turns into Leukemia.
But I have the other kind. It won’t shorten my life, affect my ability to bear children or land me in the ER. But it will be a pain in my butt for the rest of my days.
Technically, what I have is called Indolent Systemic Mastocytosis with cutaneous manifestations. Mast cells procreate like rabbits in my bone marrow (a bone marrow aspiration and biopsy in the near future will confirm this) and stick to each other like magnets just under my skin making me look like either a leopard or someone with crazy looking freckles (the crazy looking freckles was actually was got me into a dermatologist’s office and diagnosed. But more about that here[LINK]).
As for symptoms:
- I itch. If I forget to take anti-histamines twice a day, I will scratch until I make myself bleed. If I attempt to workout with taking my meds, forget it—I’ve almost fallen off the elliptical before because I was trying to scratch my legs while running.
- I have horrible acid reflux (I take TWO different antacids every day). And get nauseous after I eat.
- I flush really easily—catch me after a glass of wine and you’d think I was a middle-schooler who’d just been caught in the cafeteria with her underpants showing.
- My body sucks at regulating its temperature. I can be freezing cold and sweating. Summer and winter are the worse: my body as no idea what to do with itself when indoors and outside are drastically different temperatures. So, I’m regularly a sweat ball of grossness. Pretty, huh? At least I don’t smell. * thank goodness for small favors *
- I get really bad brain fog. What is brain fog? Well… oh crap, I forgot what I was talking about. The Red Sox? France? Dinner? That is brain fog. Mid-sentence I will completely forget when I’m saying. It’s as if I momentarily forget how to think. Or how to speak English. It’s just—blank. When it is really bad, I won’t just forget what I’m saying right then, but I’ll forget what I was talking about/thinking/reading completely. When I was still in school, I had to write my point or question down on my notebook when I raised my hand, because otherwise, by the time the professor called on me, I would have no clue what I wanted to say. Brain fog is definitely the side effect of Masto that annoys me the most.
- Then there are the days when I can barely get out of bed. On those days, my bones feel as if they weigh so much, my muscles can hardly hold on to them. As if gravity has increased its force and is pulling on me so much that when sitting in a chair, I have to fight the urge to slide off and pool on the floor. And my bones aren’t just heavy, but they feel like they are going to implode. They feel like what I imaging a black hole feels like – that there is a force that wants to make my bones collapse into themselves. In other words: I feel tired and heavy and my bones hurt.
I think that’s all for symptoms. I’ll add more later if I remember any more…. (been off my meds for a few days.. oops)
My meds:
- Gastrocrom (chromolyn sodium) – 4x day
- Zantac – 2x day
- Prilosec OTC – 1x day
- Zyrtec – 2x day
- Cymbalta – 2x day
- Vit D – 1x day
- Multi-V with extra calcium – 1x day
- Advil – 1x day (2-3 pills)
Mastocytosis resources:
The Mastocytosis Society: The Mastocytosis Society is a nonprofit organization dedicated to supporting patients affected by Mastocytosis or Mast Cell Activation Disorders as well as their families, caregivers, and physicians through research, education, and advocacy.
Wikipedia: Mastocytosis
