Carrie Jean Robinette, 46, of San Diego, has always had a lot of health issues, but she didn’t think she had a serious problem until muscle spasms overtook her body when she was traveling in 2023. The random episode triggered a cascade of medical appointments that led her to one possible answer: stiff person syndrome, a rare neurological disorder that causes muscle stiffness and painful spasms. A year later, she has learned several lessons as she continues to search for answers about her painful symptoms. Here’s her story, as told to senior health writer Katie Camero.
Everything started in May of 2023. My husband and I had a layover in the Minneapolis airport where we were waiting for our next flight to visit our daughter. I went to the restroom and started to have what I thought was a seizure. My entire body began to spasm. Like a charley horse from head to toe, every muscle in my body was cramping at the same time and I could barely walk. I came out of the bathroom in a panic as the painful spasms crawled up to the left side of my face. After about five minutes, I was back to normal. We both thought it was maybe some freak accident or problem related to an injection I had received for an impinged nerve in my neck just nine days prior. We also thought that pressure changes from the plane might have played a role, so we decided to not seek medical help at the airport and we got on our connecting flight. When we arrived at our destination, though, my spasms came back with a vengeance, and the pain was excruciating.
We found the nearest emergency room, which was in this tiny hospital in Maryland. I stayed there for a few days until the one neurologist on staff eventually admitted she didn’t know how to help me. Her honesty was refreshing but definitely scary because how often do doctors tell you they’re so out of their depth that you have to see a more specialized provider? So I flew back home where I spent the next 15 days getting every test doctors could think of: spinal tap, MRI, CAT scan, EMG, EEG, EKG, and tons of blood draws. All of the more well-known conditions were ruled out, including ALS, Parkinson’s, Huntington’s, lupus, and multiple sclerosis. Unsure of what to tell me, doctors started to become dismissive, and one neurologist suggested my condition might be psychosomatic. I didn’t have any objection to this being a mental health diagnosis, but I’ve lived in my body my entire life, and it was hard to put into words how truly physical this felt, so I just couldn’t wrap my head around the idea that my symptoms were due to stress or some sort of mental distress.
A doctor in Los Angeles was the first to mention stiff person syndrome (SPS)—a rare neurological disorder that causes muscle stiffness and painful spasms that tend to worsen over time. I immediately started to look up scientific papers, Facebook groups, TikTok, literally anything I could find about this disease. I came across this one woman on TikTok with SPS, but just a few weeks after following her, she died. That was really difficult to process because it’s terrifying to be told you probably have this disease you’ve never even heard of, and then the one person you find that’s willing to talk about it literally dies right after you find them. Of course, I also learned that Céline Dion has SPS, but at the time, she wasn’t sharing many details about her experiences. I kept seeing more specialists, but it wasn’t until I met with a rheumatologist and had a muscle spasm while sitting in front of him that I got more confirmation that this disease might be the cause. The doctor turned to my husband and said, “I know exactly what this is. It’s SPS.”
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