Category: Diagnosis

My mast cells have made a nest

Over the past week, I’ve been a dizzy, nauseous, painful mess. A relentless ache over my right kidney kept telling me I was dying, but I’ve felt this before and my CT scan was normal.

By the time I asked for an appointment, my emotions were as unstable as my mast cells. My specialist kindly lectured me on the importance of pain management. Pain can amplify allergic reactions. I tried to argue with her at first, but then I almost projectile vomited in her lap.

This time, my ultrasound was normal. Blood and urine were also normal. I was unsurprised, yet reassured to know I was not pregnant with what felt like Rosemary’s baby. All signs pointed to my mast cells as the culprits.

“Some MCAS patients call it a nest,” my specialist said.

I quickly went through the five stages of grief.

  1. This is not real life.
  2. I just wanted a damn kidney infection and some antibiotics. Why can’t I have normal problems that normal people can understand?!
  3. Maybe it would be easier to be pregnant with the spawn of the devil. At least then, it eventually comes out? Is that still a possibility?
  4. I’m never going to feel joy again, because all I can feel is this nest.
  5. I have a nest in my abdomen. It’s a thing.

Basically, I have a bunch of angry mast cells congregating on my right side and using my kidney as a piñata. Last time, I endured the pain for a week and half, and then it resolved on its own. I try not to think about living with these flares for rest of my life. As you can imagine, there’s no real treatment for a nest.

So today, I’m resting, taking pain pills, and lathering my back with Benadryl cream. And telling jokes to my nest.

Why didn’t the mast cell get invited to the birthday party?

 He’s too mean.

 

Get it… his-ta-mine.

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.) 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 MCAS reactions. Mast cell chemicals can affects every part of the body and symptoms can include IBS, bone pain, tachycardia, migraines, and fatigue.

MCAS treatment may reduce your POTS and hEDS symptoms

Do have hEDS or POTS? Get tested for MCAS! There’s a good chance some of your symptoms are caused by overactive 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 cannot rule out MCAS. In fact, tryptase blood tests are 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 hundreds of chemicals (not just tryptase or histamine) and the 24-urine test and other chilled blood tests measure several of them. Unfortunately, even a minute of heat can destroy the chemicals, so many people have to repeat the test.

Read more about MCAS testing.

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!

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Long story short

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.

IMG_4911
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.

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.