4 facts you should know about MCAS

Some days, I feel like a walking public service announcement for mast cell disease. I want to save people from the suffering I have endured! I truly believe that if I had known about mast cell disease earlier, I could have avoided a lot of damage to my body. The problem is MCAS is generally unknown or at best misunderstood by doctors. Here are four basic facts that I wish more people knew about MCAS.

You don’t have to look like a tomato to have MCAS

My mast cells have wreaked havoc on my body my whole life, but I didn’t start flushing or getting hives until I was 29 years old. (And then they told me it was anxiety. Jerks.) For me, flushing and hives were the final sirens indicating my mast cell disease was out of control. A few months later, I started to have life-threatening, anaphylactic reactions. MCAS affects every part of the body and symptoms can include IBS, bone pain, tachycardia, migraines, and fatigue. Also, hives and flushing do not occur in 20% of anaphylaxis cases!

EDS and POTS are linked to MCAS

Do have EDS or POTS? Get tested for MCAS! There’s a good chance some of your symptoms are caused by misbehaving mast cells. I used to have to call in sick to work because I was too dizzy to stand up, let alone drive. On top of that, I was plagued with seemingly random injuries to my joints and tendons. MCAS treatment resolved my POTS symptoms and decreased my EDS related injuries. Wohoo!

Tryptase is usually normal in MCAS patients

When someone tells me their MCAS test was negative, I ask them, “Did you pee in the jug?” A tryptase blood test is just one of several MCAS tests, and the result is usually normal for MCAS patients. Mine was.

The 24-hour urine test is a MCAS rite of passage. It requires skill, because you have to keep your pee cold AT ALL TIMES*. This entails racing your urine to the refrigerator each time you pee and packing it in a cooler to bring to the lab. Mast cells release dozens of chemicals (not just tryptase or histamine) and the 24-urine test measures several of them. Unfortunately, even a minute of heat can destroy the chemicals, so many people have to repeat the test.

*There may be a 24 hour urine test that does not require refrigeration because it includes a preservative. Tests are evolving!

Pink pills can cause a MCAS reaction

Although the bright pink Benadryl tablets are fun images for blog post, don’t eat them! MCAS patients react to many inactive ingredients in medications, especially dye. Always check to make sure your medication is dye free. Even if the pill looks white, check for dye before purchasing!

When things fall apart and you want to throw things

Last week, I picked up When Things Fall Apart by Pema Chöndrön, because things fell apart during my recent flare. Namely, my false sense of security.

Over the last year, I’ve rebuilt my life to accommodate MCAS and avoid triggers. My steady progress boosted my confidence in my ability to manage this disease. I thought I had woven my own safety net with a series of daily precautions.

But this last major reaction sliced that safety net in half and I plummeted without knowing how far I would fall. Overnight, I lost my ability to work, eat, or sleep. I reached for help but the hospital wasn’t safe and the emergency doctors were reluctant to do anything for fear it would make me worse. No one, not even one of the world’s leading MCAS specialists, could tell me for certain what was happening or how to fix it.

I was terrified.

So I read  When Things Fall Apart in search of peace. I found comfort in Pema’s wise words, but the funny thing is I don’t remember any of them. The only thing I distinctly remember is that she threw a rock at her husband when he told her he was having an affair and he wanted a divorce.

I never scored well on reading comprehension.

Upon further reflection, I realized that’s how I felt when I lost my sense of security. I wanted to throw things too. Specifically, I wanted to whip a full set of ceramic dinner plates against a wall like frisbees. The pain was too much, the situation was too scary, and I wanted to protest its unfairness.

I think I’m supposed to just acknowledge these feelings. However, I’m still holding out for a box of plates and a sturdy wall. My second takeaway from the book is I think I’m still eligible to become a Buddhist nun.

I probably should re-read the book.

Long story short

That moment you’re so bored in another exam room that you realize your outfit matches the table and you probably need more color in your life.

One year ago, I fell down the rabbit hole that is chronic illness. Well, literally, I fell down the stairs. I had been ignoring the pain and weakness in my legs for a couple weeks, attributing it to too much yoga. The embarrassment of falling finally prompted me to acknowledge “this isn’t normal”.  I scheduled a primary care appointment, assuming I was vitamin deficient in some area. [Insert laughter followed by sigh of resignation here.]

For the next twelve months, I was ambushed by new, debilitating symptoms each week. Sensations I couldn’t previously fathom. I am still haunted by memories of March, when I temporarily lost my ability to walk, and consequently, my ability to care for myself. I was 28 and otherwise, at the height of my independence. I acquired eight specialists and drained my savings account riding the appointment merry-go-round. Although my doctors documented my suffering, they were reluctant to provide any treatment, since my symptoms didn’t align with any disease in their specialties. Some of my symptoms were described in my chart as “subjective”.

The day after the Labor Day, I received an unprompted phone call from one of my doctors. He had used the extra time from the three-day weekend to review my chart, and among other suggestions, he recommended I make an appointment with a mast cell specialist. I scheduled the appointment, but suppressed my hopes, especially since I would have to wait months to be seen.

On December 22, I was formally diagnosed with mast cell activation syndrome. In order to meet the criteria for MCAS, you need two abnormal lab results. I had five. (I have always been an overachiever.) I was overcome by a wave of validation. Countless extraordinary experiences dismissed by other doctors now had scientific explanations. My diagnosis has allowed me to shift my precious energy from pleading for help to healing myself.

I have spent the last few months not only fighting the disease, but also recovering from the damage of my journey. I lacked adequate medical care for too long, exhausting all my resources in the process. Until now, I subconsciously stifled all reflection, because I didn’t want undermine my fight for survival.

That’s my long story short. Thank you for reading my first post! What is your long story short? More entertaining posts to come.