Megan shares her lived experience of autoimmune anti-NMDAR encephalitis:

 

Background

I had been sick with a virus in December 2023. They do not know what caused my encephalitis, but they suspect that it was induced by a virus since there was no cancerous or other clear cause.

Symptoms

Symptoms began in late February 2023. It started with neurological symptoms such as difficulty processing information (forgetting song lyrics and inability to write emails) as well as visual symptoms (losing colours and pixelated vision) and paranoia. I also could not feel emotions or pain. After admission to the hospital, these symptoms worsened (inability to understand or process anything, couldn’t eat or use bathroom). Things then progressed to constant seizures.

Diagnosis and treatment

I originally went to urgent care and was sent home after clear vitals and told to go to a neurologist when I could. A few days later, my mom took me to the ER, and they also sent me home and referred me to a neurologist. The next day, I felt like I was having a heart attack and returned to the ER. The doctor evaluated me for psychological issues and believed it to be a form of encephalitis, so he admitted me. They ran a spinal tap, which immediately showed a viral infection, so they began treating me for viral encephalitis. Three weeks later, it eventually came back as anti-NMDAR encephalitis. I remained at the first hospital for three weeks in the ICU and was placed in a medically-induced coma due to my aggressiveness and constant seizures. They treated me there with IVIG. They then transferred me to the neurocritical ICU at a different hospital for a higher level of care because they could not extubate me due to the constant seizures. At the second hospital, I was treated with further IVIG, plasmapheresis, and countless anti-epileptic and controlled medications along with heavy doses of steroids. When they tried to wean me from the drugs, I continued to have seizures. They sent my labs all over the country and recruited ideas and medicines from all over the world to try to contain my seizures. I developed pneumonia and constant concerning fevers. The doctors started Rituximab, and I had two treatments two weeks apart. After the second treatment, my seizures started to lessen, and they started to reduce the drips, which allowed me to slowly wake up. I remained intubated and could not speak, write, etc. After nine weeks in the second hospital’s neurocritical ICU, I was transferred to a respiratory rehab to wean off of the ventilator, where I was weaned (became increasingly violent behaviour-wise and even ripped my own trach out) and was then transferred to inpatient rehab for a week. In total, I was hospitalized for 4.5 months.

After effects

I came home in July 2023 but don’t remember anything over the six-month period from February to August 2023. I lost 25 pounds. I came home unable to speak at a volume louder than a whisper. When I had my outpatient therapy evaluation, I tested in the bottom 0.3%. I couldn’t name more than four zoo animals in a minute or recall three numbers that I’d just heard. I went to outpatient speech and cognitive therapy three times weekly for three months and did countless hours of worksheets at home to regain my cognitive abilities. I had to re-learn how to speak French, play piano, read, write, do basic elementary math, etc… literally everything. I felt mentally recovered by October 2023 and was weaned off of all 11 prescription medicines that I came home with by December 2023. I have gotten Rituximab every six months since I’ve been home and continue to be followed by a neuroimmunologist. I also have continued speech therapy since my voice is still weaker from the extended intubation and tracheotomy.

Words for others

It was extremely hard for me in the moment to see the progress that I was making day-by-day. The recovery felt slow and impossibly unattainable. I would encourage anyone going through the recovery to keep putting in the effort even when it doesn’t feel like anything is improving and to not be discouraged if it doesn’t seem like regular progress is being made. It just takes time and effort and is much easier to see the changes in hindsight. For families, I would encourage them to support their loved ones lovingly and not take their words or actions personally. I don’t remember anything that I did or said and certainly didn’t mean any of it, although it hurt my parents’ feelings. My parents’ unwavering support was invaluable to me during my recovery and I couldn’t have possibly recovered in the way that I did or at the speed that I did without them.

 

I have a longer version of my story on my blog: https://inmyblankspaceera.wordpress.com/

 

Story published April 2025