This week in mast cell disease (MCAS) included temporary kidney shutdown on Wednesday (swollen feet and ankles), insane migraine Thursday, fake heart attack Friday, and hives on Saturday. I used to think it was going to kill me, but now I think it’s just here to torture me.
mast cell activation syndrome
As a brief note today, when I got really sick in the years 2014-2017, I used to tell my doctors that I feel like I’ve been poisoned. As I learned more, I’d tell them that it felt like toxic shock syndrome, anaphylactic shock (anaphylaxis), or sepsis, because it felt like I was about to go unconscious (pass out, also known as syncope). Indeed, I did lose consciousness seven times.
They all looked at me like I was crazy when I told them these things, but it turns out I was right: I have a rare blood disease named Mast Cell Activation Syndrome, or MCAS. It’s a disease of your body’s mast cells, which are a type of white blood cell. If you have MCAS you essentially have been poisoned, because your body’s white blood cells are reacting to something in the environment — something you ate, drank, smelled, touched, breathed.
If you feel like you have symptoms like these I encourage you to learn more about MCAS, either by following the first link to Wikipedia, or by following this link to my blog posts about MCAS.
At some point somebody was like, “Let’s get a mast cell — a type of white blood cell — from a bone marrow biopsy, magnify it 1,000 times, piss it off, and see what happens.”
The result? Ka-boom! It looks like a little firework went off when it released its histamine, tryptase, serotonin, superoxide, heparin, thromboxane, PGD2, PAF, and other granules.
That’s pretty much what it feels like, lol. I used to tell doctors that it felt like I had been drugged, and indeed, I was.
This image shows symptoms of Mast Cell Activation Syndrome, from this article. I can personally attest to abdominal pain, cramping, bloating, nausea, vomiting, difficulty digesting certain foods, muscle and bone pain, muscle weakness, nerve pain, headache, neuropathy, difficulty concentrating, reduced attention span, brain fog, itching, rashes, hives, inflammation, swelling, flushing, inflammation of the eye or conjunctivitis, trouble focusing eyes, itchy and watery eyes, a burning sensation, ulcers on the tongue or in the mouth, coughing, wheezing, difficulty breathing, runny or stuffy nose, sneezing, sinus pain or pressure, enlarged spleen, elevated liver enzymes, high cholesterol, rapid heart rate, abnormal blood pressures (either too high or too low), fainting, anaphylaxis, chemical and environmental sensitivities (and more).
Meet The Teenage Girl Who Is Allergic to Almost Everything is a good story about the blood disease I have (MCAS, or Mast Cell Activation Syndrome). I’m very fortunate that I didn’t have bad symptoms until the last 7-10 years or so, and removing part of my colon recently has also helped reduced the symptoms. It would major-league suck to have this disease when you’re 15 years old.
Before doctors figured out that I have a rare blood disease called Mast Cell Activation Syndrome (MCAS), I went unconscious seven times, typically vomiting while I was unconscious.
Right before the first event I was stumbling around my apartment like I had been poisoned, splashing cold water on my face, and generally just trying not to die. Despite my efforts, I went unconscious.
Right before the second event I thought, “If I live through this one, I need to update my will.”
Right before the third event I thought, “Apparently I’m going to die soon. I just want other people to be happy, and if I live, I want to help them however I can.”
After that, for events #4 through #7, along with three subsequent cases of allergic angina — what I call “fake heart attacks” — I had no significant thoughts in my mind, just peace.
These days when something bad happens I recall those 7-10 events, and know that I could have died during any of them. When I think that way, all of today’s little problems seem insignificant.
This slide on “Mast cell-associated disease-specific pain syndromes” comes from doctors Tania Dempsey and Lawrence Afrin. I don’t remember exactly where I saw it, but it was probably on The Mastocytosis Society Facebook page.
A few notes from the article I linked to:
This post discusses medications used to treat MCAS. Doses listed are taken directly from “Presentation, diagnosis and management of mast cell activation syndrome” by Lawrence B. Afrin. These doses are general recommendations. Medication should always be taken under the direction of a provider who knows you and your case personally.
I woke up Thursday morning at 2:15 am and quickly knew something was wrong; if I didn’t act fast I was going to go unconscious for the eighth time. I threw down some Zyrtec and Benadryl, put some ice in a towel, went outside, and sat down with my head between my knees. (When I get close to passing out I feel extremely warm, like some form of hyperthermia, so I try to cool down as fast as possible.) I don’t even know what I did wrong this time, but that’s how life with MCAS rolls.
This image shows the symptoms of mast cell disease. I’ve had every one of those (except for that gynecological one). The image comes from The Mastocytosis Society website.
Update: I noticed that they missed a few things, including unusual/allergic reactions to medications and insect bites.