Tom, a physically fit former body builder, shares his lived experience of autoimmune anti-NMDAR encephalitis:

 

I had been dealing with long term COVID-19 issues since summer of 2000. I had a very technical job and after finding myself making mistakes, that I usually did not, and being asked by co workers if I was ok, I went and saw a neurologist and my primary doctor.  I was informed that something was wrong they just had no idea what, this was at the start of 2021. I was then advised not to go back to my job and throughout the year had appointments and tests and also an appointment with a state disability doctor. He reviewed my records and said he hoped they found what was wrong and processed my disability.

May of 2022 I once again got COVID-19 but this time was mild, or so I thought. Slowly my fatigue got much worse and my speech started to be hard. Processing was becoming harder and I was having headaches and crazy nightmares that I would wake up sweating, confused and scared. I was attending speech therapy and was a regular at my primary doctors and neurologist. Everyone close to me could see me getting worse and yet nothing came from my neurologist. Thankfully, my primary doctor knew me for many years and knew something was wrong and suggested moving to a new neurologist who from the first visit thought something was being missed. They ran tests. In July, my tests showed the N-methyl-D-aspartate receptor (NMDAR) in my blood so a spinal tap was ordered. The spinal tap was not easy as I’m a former bodybuilder and have lower back issues which made it hard to get. Finally in fall of 2023 I was put under anesthesia and the results was positive for anti-NMDAR encephalitis .

I was admitted to hospital 2 days after my new neurologist called with the news. I underwent steroids, IVIG, rituximab and plasmapheresis over a period of a few months.  The plasmapheresis was the best treatment for me. Then a pet scan showed a spot which ended up being stage 3b nodular metastatic melanoma. Confusion started as my pet scan prior to treatments was clean. I then found out how cancer and NMDAR autoimmune encephalitis treatments work against each other and made the decision to stop my 3 scheduled rituximab treatments as I knew if my immune system was low it gave cancer a better chance.  Cancer treatments were held off as they increase your immune system and the thought was it would make my anti-NMDAR encephalitis worse.

So here I am in early 2025 still fighting. My speech has improved greatly however its still hard and I tire easily and often. For someone who was extremely active this has changed my life however I’m thankful to still be here.  I’ve been told the road to recovery is slow and because of my delay in treatments the end is not guaranteed however its better than I was. My other saving grace has been my wife and service dog along with a close circle of friends who understand my fatigue, help me with my sentences when needed and take me to appointments in Boston as I don’t feel comfortable driving in the city now.  I’d rather be on the safe side so when I know I process slower I keep myself and others safe.  I got my service dog in 2021 as a puppy. I would sit home on the couch all day and wonder what was going on. I then decided to participate in a program to train him to be a service dog and he passed. Now he goes to all my appointments with me. He loves the doctors and nurses who help his dad. I’ve been asked to write a book and have been commended on my positive attitude by my doctors. The road continues and if I can help others stay positive, never give that is my goal.

 

Story published March 2025

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