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).
mast cell activation syndrome
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.
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.
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.
In honor of Rare Disease Day (February 28th), here’s a today.com story about a woman who has a more severe form of the illness/disease I have. A few quotes:
“Johanna Watkins, 30, is allergic to almost everything and everyone, including her husband Scott, 29. She’s been diagnosed with mast cell activation syndrome, a rare and progressive immunological condition.”
“She has a list of 15 foods she can eat and that’s it. Even those foods make her feel ill, it’s just that they don’t kill her. She’s eaten the same two meals for two years.”
Update: In 2016 Johanna wrote this article, What I’ve learned being isolated and allergic to everything.
(The image is from the today.com story.)
If you have Mast Cell Activation Disease (MCAD, also known as Mast Cell Activation Syndrome, MCAS) and need to have a surgery, here is the advice I received from the doctor/specialist who is treating me for MCAD/MCAS: “For patients such as yourself, I suggest continuing on antihistamines and taking prednisone (40 mg) the day before, the morning of, and soon after a procedure. Generally, the anesthesiologists and surgeons are fine with this.”