When I write articles about my life with indolent systemic mastocytosis (SM), they are about my own experiences. I do not attempt to explain the disease and all its symptoms. The medical doctors do that. I strictly write about my symptoms and my own way of life living diagnosed with this disease the past 25 years. Awareness can help others — something I was reminded of when I found an ER doctor who already knew how to treat my ISM.
Dealing with strange new symptoms
Recently I had to visit the emergency room again in my small hometown in Louisiana. I was there a couple of weeks ago with a flareup of itching. It ultimately lasted a month: there were medication shortages that did not allow me to find the appropriate medicine I needed. Finally my doctor in Utah who treats my ISM prescribed me a compounded mast cell stabilizer, and it worked.
My symptoms normally pertain to the skin and my gastrointestinal, musculoskeletal and neurological systems (I do have an enlarged liver and spleen, as well). These are the areas of my body where I deal with flareups. I am familiar with how my body reacts to flares with each of these.
Around two weeks ago, I started feeling different. Constantly, I would get dizzy and lightheaded all of a sudden, then my head would swoosh and it felt like my heart would skip a beat. At first, I started checking my blood sugar, but my numbers were good. Later that night as it continued to happen, my husband got out the blood pressure cuff and we started measuring my blood pressure.
My blood pressure was dropping low, and my resting heart rate was up to around 110. That is when I experienced the symptoms. I had no chest pains. So, I went to bed and waited overnight to see if it continued. Well, it did. That next morning, I got up and went to the doctor’s office and told them what was happening to me. They sent me straight to the ER.
I was hooked up to a heart monitor, and they took blood and did an EKG. They were ruling out a heart attack. I was having tachycardia. At this point I was scared that I was having heart-related issues.
Finding an ISM-fluent doctor in the ER
When the test results came back the ER doctor (who was from Mississippi) came in and finally spoke with me. I had never seen him before at the hospital. Imagine my surprise when he came into my room and was familiar with ISM and other mast cell diseases. He of course wanted to rule out a heart attack before speaking with me, but he believed all along I was in a mast cell flareup. This time cardiovascular. I have never experienced a flareup with my heart.
He told me that he was going to give me diphenhydramine and watch me for an hour. I could not believe it, but it worked. All my symptoms calmed down. I came home and continued taking diphenhydramine several more times, until the symptoms disappeared altogether. I was fine again.
I have lived with this disease all these years, but I learned something new about my body reacting to a flareup. I just want to say this trip to the ER and having a doctor know about my disease was so appreciated. He was a very nice doctor too, and young. This is my second visit to Winn Parish Medical Center Emergency Room in a little over a month, and both times I’ve had terrific doctors. The previous doctor knew nothing about my disease, so she contacted my doctor in Utah and worked with him. I am impressed with my small-town ER department.
It does not matter how long you live with a disease. There is always more to learn, either by experiencing firsthand or reading patient articles and medical articles. And the best place to read them is SM Companion and its sister site, Rare Disease Advisor. It is an honor to be able to write for both publications, and I hope that my writing might help at least one person.
I want to personally thank the doctor who treated me that day, Dr. Matthew Verruchi. I wish more doctors would take the time to understand about rare diseases. If it had been anyone else, I would have been sent somewhere for a stress test and to see a cardiologist, ultimately costing me more money and time.
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