Anti-NMDAR Encephalitis Lived Experience – Ger’s Story

Below is Ger’s Anti-NMDAR Encephalitis Lived Experience.

My name is Ger and at the time of writing this I am forty years old. I was only diagnosed around 7 years ago with Anti-NMDAR encephalitis; however, it is suspected that this was the third time I was hospitalised with the illness.

FIRST TIME

I lived in Kildare in 1995 and I suddenly started acting abnormally. This came with hallucinations, seizures, and blackouts. When the symptoms got very bad, I was sent to my local hospital where the doctors decided to send me to Dublin where they had better facilities. They initially believed that I was having epileptic seizures, so I was prescribed anti-seizure medicine. Although there were no actual tell-tale signs of seizures found.

Because of my age, I was too young to be admitted to an adult facility, so I was treated in a children’s hospital in Dublin. I have no recollection of my time in the hospital, only vague memories from months into my stay but the order of events are all mixed up in my head. I was told that a specialist who dealt with Creutzfeldt-Jakob Disease (CJD) came to visit as there was an outbreak happening at the time in Ireland of Mad Cow disease, however, this was ruled out in my case.

Eventually, my parents asked if I could be discharged from the hospital as I had not been showing any signs of improvement. They were reluctant to keep me there indefinitely and it was better for me to be with family as there was a lot of traveling involved. After many months in the hospital, I was unable to walk or speak but could write short words to communicate what I wanted.

I had been taken out of school and was asked to join a program for special needs children. But once I arrived it became clear that it was not the place for me. So instead, a special needs assistant was assigned to help me as both my parents worked and were unable to help. I cannot remember much from this period, but I do remember it was around my birthday when I managed to speak my first words again. Eventually that summer I was able to recover and repeat the year and finish a year behind in school.

SECOND TIME

Around 2002 aged 20, I was repeating the first year of college and living in Waterford. I was at my part-time job when I had a seizure/blackout in the car park while out gathering shopping trollies at the end of the day.

I went to hospital but then was discharged and forced to leave college and move to Wexford as my parents had just bought a pub there. While I was staying there my health started to go downhill until I was hospitalised again. Once again, they thought the problem was epilepsy however, I was often treated as a psychiatric patient due to my mannerisms and because I could be a danger to myself and others.

Again, I have no real memory of my time in the hospital as I did not make any sort of improvement. As before my parents asked for me to be discharged and slowly over the next few months, I was able to gradually recover again.

 

THIRD TIME

I had moved to Waterford with my partner Linda, and I had completed some further education courses. I then decided to complete a visual design course for a year to re-apply to university.

One week I started to act abnormal and not like myself, on one occasion during the night I felt a weird sensation, that can only be described as an “aura”, and it seemed familiar to what had happened before when I was starting to get ill. I told my partner that I thought I was having a mild episode as I was very aware of any “odd things” that were going on. My partner then mentioned it to my mother, and we didn’t think any more of it. A day or so later I was getting ready to leave for college and for some reason I could not bring myself to get dressed. My partner who worked as a carer at the time, came home to see me very anxious. I was unable to think clearly almost like I was having a panic attack which I never had suffered from before. This was very out of the ordinary for me as I am a very laid-back person.

I decided to stay at home where things got even worse to the point where I suffered from insomnia for two weeks straight. Eventually, we went up to the hospital where I had another blackout in the admissions area. My partner called my mother to tell her, and my mother knew I was having another relapse and that things were only going to get worse.

Over the next few months leading up to my recovery, I have very splintered and very vague memories. While I was in the hospital, I was told I was given many different medications for psychosis and anti-seizure tablets. And during that time, I was visited by a neurologist to look at my case which they suspected was a case of Anti-NMDAR autoimmune encephalitis.

I was given a lumbar puncture as no indicators were found in my blood so the only way to rule it out. Once they tested me, they found signs of the antibodies and I was given an IVIG treatment, which initially didn’t look like was working but may have taken time to manifest in my body to fight the source of the increased antibodies.

Last year at the end of the summer I was asked to go for another lumbar puncture by my neurologist, where they found that the antibodies were present even though I did not show or feel any of the symptoms that I had before. It was suggested that I go on a course of IVIG infusions every five weeks for an extended duration. During that time, I was doing my final year in college studying Visual Communication which I found stressful but manageable.

Around the time I completed my projects, I was taken off the treatment and was given another lumbar puncture during the summer of 2022 which also came back positive for antibodies. Now I am currently awaiting results from the specialists on these matters to see what decision to take from there.

 

Find out more about Anti-NMDAR Encephalitis here.

For more stories about encephalitis, click here.