I recently had someone contact me in regards to their relative who was in a hospital, diagnosed recently with autoimmune encephalitis. It was an ongoing situation, and therefore extremely painful for them. Probably unless you are in the neurology field, or immunology, you have never heard of autoimmune encephalitis, unless it happens to you or someone you know. Most people think of brain injury being caused by a physical accident, such as a sports injury, by stroke, or by dementia. Very few people could imagine that a young person, twenty or thirty years old, could also receive a brain injury, from the immune attack of their own body.
The person who contacted me described their relative as being young, and previously completely healthy. Going from that state, to being in a hospital, held down due to severe aggression and violence, is of course shocking. I was asked whether myself I ever recovered, whether I was able to work. The person was concerned that their relative does not love them anymore. They did say after our conversation that talking to me gave them some hope, given that I also had similar symptoms of aggression and violence, swearing, believing that my close people were making plans on how to get rid of me. Not being sure if they were actually real, whether they existed, or only in my thoughts. It’s hard to describe that experience. And then going back to a much more normal state – being able to spend time with people as usual, not constantly finding secret meanings in their words, not seeing predictive signs everywhere. I also sent that person a story of recovery that I found on YouTube, and I hope it will add more hope for them as well. The young woman in the story clearly had a very severe case of encephalitis, as she was not able to recognize her parents and some point, she ended up in a coma, and currently does not remember those several months of illness. Also she provides important information on treatment in the video – for her it was specifically a combination of two chemotherapy drugs, Cytoxan and Rituximab. I think it’s important to know, as IV steroids or IVIG may not work for all cases of encephalitis. It’s good to know about other available treatment options, which as you can see, in some cases lead to great recovery.
Anti NMDA Receptor Encephalitis – Amanda’s Rare Autoimmune Disease Story