GoKawiilEncephalitis
I was recently diagnosed with anti-NMDA receptor encephalitis. It is an autoimmune disorder where your body’s normally helpful antibodies start acting strangely. This leads to inflammation in the brain. This short blog briefly discusses some of my experience and prognosis.
Target audience: Anyone relying on my work for their own projects.
It all started with flu-like symptoms: heart racing, night sweats, the chills and trouble sleeping. But no congestion or cough. I also felt really off mentally. A deep sort of anxiety, along with panic attacks, that I had never experienced before in my 38 years of life. It was terrifying, especially because I had no idea what was causing it. There were no life events or obvious triggers that precipitated the psychological symptoms, nor was there any obvious biological explanation for the physical symptoms at the time. This was only the beginning.
Over the ensuing weeks my physical symptoms progressed to chronic jaw pain, making it incredibly difficult to eat. I also had problems with my balance. As someone who has easily juggled 3 balls and played sports for my entire childhood, I couldn’t catch a ball lobbed to me from a few feet away by my 5 year old son. My psychological symptoms were perhaps even more horrifying to me. I had suicidal ideation and suffered from psychosis. Specifically, delusions and auditory hallucinations.
The problems with balance and the overwhelming nature of my psychological symptoms eventually led me to fall and hit my head. This in turn led myself and my wife to decide that I couldn’t be safe at home. And that brought us to my first emergency room visit. They cleared me physically and sent me to an in-patient psychiatric hospital, which, at the time, I welcomed because my symptoms had progressed beyond what we could manage at home.
It is common for anti-NMDA receptor encephalitis to be misdiagnosed as (in my case) generalized anxiety disorder or schizophrenia. Since I had been cleared physically, getting out of the psychiatric hospital quickly to see a neurologist proved difficult. This was the single point, in retrospect, where our health care system let me down. It took a lucky connection with someone who happened to be a doctor to get me out of the psychiatric facility and into the neurology department at Brigham and Women’s Hospital in Boston.
After that, I was in and out of Brigham and Women’s Hospital for almost a month. I had several MRIs, a lumbar puncture, EEGs and many more tests. As a result of what I now see as a life saving treatment protocol, I very quickly received intravenous immunoglobulin (IVIG) and methylprednisolone, even before my diagnosis was known. In particular, MRIs revealed a lesion in my brain. However, confirming a diagnosis of anti-NMDA receptor encephalitis would come later since it is best done with at least a positive antibody test in your cerebral spinal fluid. Results from this specific test typically take a couple weeks to come back.
By the time I received my official diagnosis, the IVIG and steroids had kicked in and I was feeling much better, albeit, not nearly at 100%. I’ve since continued on a course of steroids that I am now already tapering off of. I’m also tapering off of medications I had been prescribed as a result of my psychological symptoms, before encephalitis was known to be the cause. Moreover, I am now officially in the CIELO clinical trial for testing the effectiveness of satralizumab in treating anti-NMDA receptor encephalitis.
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