mast cells

Feeling like I was poisoned (or toxic shock syndrome, anaphylactic shock, or sepsis)

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.

MCAS/MCAD: What an activated mast cell looks like

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.

(Image from this nih.org research paper.)

MCAS/MCAD causes chronic inflammation in multiple organs

Per Dr. Tania Dempsey, one of the leading researchers in the mast cell field, “MCAS/MCAD causes chronic inflammation in multiple organs/tissue/systems, with or without allergic-type problems and sometimes even abnormal growth and development in various tissues, and there can be acute flares of symptoms.”

Anyone who has seen the inside of my body through MRIs, CT scans, and ultrasounds will agree with that statement. (I write that with Surgery #8 coming up in about three weeks. As usual, a very experienced doctor used words like, “I’ve never seen that before,” “abnormal,” yada yada yada.)

Mast cell-associated disease-specific pain syndromes alvin July 25, 2018 - 11:32am

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.

Recovering from colectomy surgery

July 15, 2018: A little less than three weeks ago I had a type of surgery known as a colectomy, a procedure where a portion of the colon is surgically removed. The background of the story goes like this: Because of pain I was having whenever I tried to eat, I haven’t been able to eat solid foods since October, 2017. After eight months of hoping the problem would heal itself, I was finally forced to give up that hope when it became apparent that surgery was the only hope for a relatively normal life.

Cause of trembling eyelid

When I learned that I have Mast Cell Activation Disease (MCAD/MCAS), I learned that it is a potential cause of a a trembling eyelid, which is technically known as a blepharospasm. The area under my right eyelid started trembling at least fifteen years ago, but no doctor ever knew the cause of it, and they would usually just say, “Get more rest,” which of course had nothing to do with the problem. As I learned from reading this book about mast cell disease — which is where the image comes from — it turns out that there are ~5,000 mast cells per cubic mm of conjunctival tissue, i.e., the inside of the eyelids.

Mast cells don’t die, they just multiply alvin June 13, 2018 - 8:55am

“Mast cell disorders are neoplastic disorders, which means the mast cells multiply continuously over the patient’s lifetime. As with cancer cells, mast cells do not die, disappear, or cease to function, on their own.”

Symptoms of mast cell disease (image) alvin February 28, 2018 - 10:39am

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.