I don’t always get sick, but when I do ... it’s nice to find other people who are going through what I’ve been going through, and they still have a sense of humor about it. If you have a Pinterest account, this “My Mastocytosis” page is great.
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.
“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.”
If you suffer from horrible, unexplained bone pain where it feels like your bones are spontaneously breaking for no reason, you might want to have your doctor test you for things like systemic mastocytosis and mast cell activation disease (MCAD, also known as mast cell activation syndrome, or MCAS).
When I was very sick in 2015-2016, I used to tell my doctors it felt like I had been “drugged.” When I could see that they couldn’t understand or believe that, I’d tell them that it felt the way you feel after surgery, groggy and woozy.
For the most of this year I’ve been eating very well, but yesterday I went to see a movie (Logan) and had some popcorn. Shortly after eating the popcorn I started to feel sick, and today I feel like I’ve been drugged.
This — as I have learned — is life with mast cell activation disease, known as MCAD or MCAS.
The “TMS For A Cure” website has this great page on medications to treat mast cell disorders.
Lisa Klimas at MastAttack.org has a nice mast cell disease fact sheet, including the information on the image shown.
This “What’s in a mast cell?” slide by Tiffany Blackden implies that mast cells contain over 100 different molecules that a) protect the body, but b) also cause inflammation.
TIL that Season 8, Episode 1 of “House” is about mast cell disease. I found that tidbit in a great little book titled, My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders.