Diagnosis Number three: mast cell activation syndrome

In 2012, I had the exciting experience of being part of an Ehlers Danlos conference in my home state of New York. It was my first, but certainly not my last, of this educational and social events.

While sitting in one of the sessions given by a physician, he began to describe a condition often occurring in EDS patients. Symptom by symptom, I realized, he was describing me.

Once home, I researched allergists/immunologists specializing in this field. Dr. Mariana Castells at The Mastocytosis Center in Boston was the closest to me. I went on a wait list, that back then seemed so long, but now is considered short. After 8 months, I had my first appointment. Blood test, urine tests and a thorough physical exam and history. I was a bit shocked when she handed me a script for EpiPens and began to describe MCAS, mast cell activation syndrome. Another diagnosis…

I was in a bit of denial and started to tell her I didn’t have anaphylaxis, wouldn’t need the EpiPens. She started to chuckle and told me all RNs give her a hard time about them, but I would always need to carry them.

The following symptoms were common for me but not yet anaphylaxis:

  • hives
  • itching
  • odd rashes
  • congested and drippy nose
  • flushing
  • abdominal pain
  • lightheadedness and near fainting
  • sudden drops in blood pressure

Luckily for me, I listened to Dr. Castells, because in the photo, I am in the ER, after my first anaphylactic episode. I have no idea what precipitated the event. One minute, I was sitting at my desk in my home office, then I suddenly felt ill. Gratefully, my husband was home, because it happened so suddenly, I was down quickly, and he gave me the EpiPens and called 911.

In 2012, there was little knowledge about MCAS, but Dr. Castells had given me a written Emergency Protocol to bring to then ER. My husband remembered to bring that Emergency Protocol and was a great advocate for me. He advised the ER that the phone number on the protocol would go to a physician in Boston 24/7 if they had questions. Here is a guide with an Emergency Protocol from The Mast Cell Disease Society that can be taken to your allergist for review and signature:

https://tmsforacure.org/wp-content/uploads/2023/03/TMS_Full-Patient-Guide_r6.pdf

That was the first of 14 episodes of anaphylaxis until we were able to gain better control. The saga continues as more diagnoses are added, complicating the treatment plan.

 About Author Jan Hempstead

My name is Jan Hempstead and I’m an RN, although I medically retired sooner than I would have liked because of my multiple diagnoses. I’m also a mom, wife, sister and friend.

This blog is my story about living well with Ehlers Danlos syndrome (EDS), rheumatoid arthritis (RA), mast cell activation syndrome (MCAS), chronic kidney disease (CKD), hereditary alpha tryptasemia (HaT), dysautonomia and Sjogren’s Syndrome (SS).

I started out with EDS and one by one, another diagnosis kept getting added on. Come follow me as I share my journey with multiple specialists, what has worked and has not, and where I’m going next.

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