Matt shares his experience of seronegative autoimmune encephalitis

This past year, my life changed in a way I could never have imagined. As scary as it was, I’m also so grateful for the people who supported me.

Journey to diagnosis

At the end of July 2024, I travelled to Dallas, Texas, for work. While there, I developed what seemed like typical cold or flu symptoms. When I returned home, I went to urgent care, where I was tested for COVID-19, strep, pneumonia, and other illnesses. All the tests came back negative. The doctor prescribed antibiotics, and I went home expecting to recover soon, but I didn’t—days passed and my condition only worsened. On the day I was finally taken to the hospital, my wife couldn’t even wake me up. I was rushed to the ER and diagnosed with sepsis. From that moment, I lost all my memory for the next 2 weeks.

Those weeks were a blur I know only through stories from my family and doctors. I was tested for various illnesses, including eastern equine encephalitis (EEE), West Nile, and Zika virus, all of which came back negative. Then things got even more frightening—I began losing vision and experiencing double vision, though I don’t remember this myself. My body was scanned for cancer, but thankfully, that came back clear too.

Treatment

When the hospital planned to discharge me, my incredible wife insisted that wasn’t an option. Her persistence led to a transfer to a hospital with a more advanced neurology team. It was there, after another spinal tap, that I was diagnosed with seronegative autoimmune encephalitis. The doctors started me on steroids, and the results were almost immediate. My memory, speech, and awareness all began to return.

During this process, doctors also discovered a nodule on my thyroid. After further tests, I was diagnosed with Hashimoto’s disease, an autoimmune disorder. Through research, we learned about a potential connection between autoimmune encephalitis and what’s now called steroid-responsive encephalopathy autoimmune thyroiditis (SREAT). This explained my positive response to the steroids.

Recovery

Recovery wasn’t instant. After leaving the hospital, I had to undergo cognitive therapy to rebuild my memory and improve how I processed information. It was terrifying to know I had no control over my body during those critical weeks, no memory of the scariest moments, and no way to take responsibility for my recovery at the time.

Even now, I still face challenges with memory, finding the right words, and fatigue. But I’m so thankful—for my wife, who fought for me, my kids, my family, and the incredible neurology team that gave me a second chance. I can’t imagine what might have happened if I had been sent home that day.

Looking back, we’ve found moments to laugh about, like the bizarre things I said to the nurses. But the lingering uncertainty—why this happened and whether it could happen again—still weighs on me.

For now, I’m focused on gratitude and paying it forward.