I was diagnosed with generalized myasthenia gravis (MG) in August of 2019. I wish I could say I was in shock, but I wasn’t, because I had never heard of myasthenia gravis.
An unusual diagnosis
While I had been on a business trip a couple weeks prior to being diagnosed, I had looked into the mirror in my hotel room and saw my right eye was completely displaced: my eyelid covered nearly my entire eye! I thought to myself, “Well, that’s not good!” I called my PCP, and they wanted me to come in right away — but I was in New York City, and I had a meeting to get to. I told them I could make an appointment in a couple days. I didn’t know then how serious my situation was.
I returned home and my PCP ran a panel of tests, one of which included a test for positive ACHR (acetylcholine receptor) antibody, which indicates MG. I had tested positive.
I didn’t know how unusual my quick diagnosis was until I began speaking with others in the MG community. Many people living with MG take years to get diagnosed. I was diagnosed within a couple weeks of seeing my primary care physician. I was very lucky!
I didn’t understand the full implications until I was talking with my CEO. I worked for a life science consulting firm at the time, and my CEO was a neuroscientist. His response to my statement of being diagnosed with MG? “I’m really sorry, Tom.” That hit me hard.
I worked there for another two and half years and then needed to resign from my position as head of global sales. MG was stealing quite of bit of my life, and now it was stealing my abilities to do my job. With the fatigue factor and brain fog, weakness in my lower body and an impact on my ability to walk, my eyes being affected by diplopia and a drooping eye lid, and at times trouble swallowing, I could no longer perform the requirements of my job. I needed to focus on my health.
Contributing to the MG community through tech
Today, I work to improve the way technology can positively change the quality of life for people living with MG. I use my background with a life science consulting firm leveraging applied technologies to reduce time to outcomes in science.
I truly believe it’s part of my responsibility to contribute wherever I can to the MG community. I will be writing about MG and how the latest technologies will help us better understand what is going on in our bodies in real time. There are some amazing new technologies coming to the MG patient market which will measure how our bodies are functioning! This will compliment tools such as the Activities for Daily Living (ADL) providing additional detail for you neurologist.
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