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.
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).
“Why am I always sick?” That’s a question I used to ask myself a lot. Other people asked it as well: “Al, why are you always sick?”
I remember one time I was in the same room as my wife while she was on the phone. She was taking to her sister, who was talking about her husband (my brother-in-law), and their conversation went on for quite some time. Afterwards I said, “Wow, I hope you guys don’t talk about me all the time like that.” My wife said, “No, we just say that you seem to get sick a lot.”
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.
In retrospect, mast cell activation syndrome (MCAS) (or mastocytosis) explains many mysterious health problems. For example, six years ago I took a routine blood test and my doctor found that my Vitamin D level was extremely low, even though I was out in the Sun every day and took a multivitamin supplement, in addition to drinking milk and eating a lot of cheese. Then last year I told my doctor that on four occasions it felt like bones in my feet, hands, and arm had broken spontaneously, but she just looked at me like I was crazy.
One way to describe what I was going through was “brain fog,” or having difficulty thinking clearly, articulating my thoughts, and remembering anything. This quote comes from the mastocytosis.ca web page:
“When the symptoms occur, it is common for patients to have difficulty thinking clearly ... mast cells are in every organ including the brain.”
This is a list of “Nonimmunologic histamine releasers other degranulation triggers” from the Mastocytosis Society of Canada. Please see their website for more information about Mastocytosis triggers.
I just read that mast cell diseases are inherited, and this list makes me wonder if this comes from my dad’s side of the family. I know that he was allergic to quinine, which is on this list, and if I remember the story right, one of his brothers died when given a radioactive dye during an MRI or CT Scan. I got very sick the last time I was given dye during an MRI, and immediately broke out in hives.
This MastAttack.org page may describe what I have been doing through:
“Mast cell activation syndrome (MCAS) (also known as ‘Mast cell activation disorder, or MCAD’) is when a normal amount of mast cells behave badly. It is clinically similar to indolent systemic mastocytosis; life span is normal; biopsies are negative.”
Wikipedia also has a good mast cell activation syndrome page. Both pages cover the MCAS/MCAD symptoms very well.
As someone who is dealing with something like Mastocytosis or histamine intolerance, this book, “My Crazy Life: A Humorous Guide to Understanding Mast Cell Disorders,” strikes a chord with me. For a long time you walk around going “WTF?,” and during that entire process you find that American doctors are no help at all.