Autoimmune Encephalitis Story (part 1)

“You asked me once,” said O’Brien, “what was in Room 101. I told you that you knew the answer already. Everyone knows it. The thing that is in Room 101 is the worst thing in the world.”

— George Orwell, 1984.

I have been misdiagnosed with schizophrenia and after a while diagnosed with autoimmune encephalitis (Hashimoto’s Encephalitis), in April 2017. It has been a long way for me obtaining a proper diagnosis and I would like to share my experience.

It’s hard to pinpoint a specific moment when my symptoms started because the onset was very gradual. Perhaps this type of autoimmune encephalitis is a genetic condition from birth and symptoms worsen over time? There is a lot we still don’t know about the pathogenesis of AE.

Childhood

As far as I can recall, I had low self-esteem and anxiety issues. Also I remember very clearly a few episodes from childhood where I experienced a sudden onset of dread and a sense of claustrophobia. One event was very terrifying. I was probably five or six, I was lying in bed trying to fall asleep, when suddenly the closet near the wall started to enlarge and bend in towards me. The walls of the room were shrinking, and even though my mom and my brother were just in the next room, I suddenly felt completely isolated, becoming trapped by the gigantic closet. I jumped out of bed and ran out of the room. The presence of other people in the living room and their voices calmed me down.  This episode did not repeat and I never mentioned it, until almost twenty years later.

20 years later

I used to be a pretty active person. While doing my bachelor’s degree in economics and finance, I was also learning French and started to play the violin. I often went camping, when the weather allowed, as well as hiking and downhill skiing. I never felt very good about myself and I did experience anxiety due to that, but I did have a keen interest in life. I rarely felt bored and I had many plans such as learning Mandarin, writing a book, and becoming a better violin performer.

2012

In the end of 2012 I was in the process of doing my master’s degree in economics. Due to my constrained budget, I lived in a basement at that time, an arrangement which I was not very happy about. I started to notice a swelling under my left eye and I became concerned that I was having a reaction to mold that could be hidden under the baseboard. I did go to the university walk-in clinic but the attending doctor said that she did not see any swelling or the prominent eye bag that I was talking about. I was not satisfied with the answer and in general I was becoming less satisfied with everything. The graduate program was quite stressful for me and I was also living away from my boyfriend and my parents. Few people will tell you that grad school is easy, so increasing feelings of anxiety during this time did not seem to be a reason to see a doctor.

One evening in November I stayed alone at my boyfriend’s bachelor apartment. We were both there during the day and in the evening he left to a friend’s party, to which we were both invited. I did not join him and said that I had to study. I did have a lot of course readings to do but I did not mention that the main reason was something else.  I chose not to go to the party because I sensed that I was not wanted there. My boyfriend’s ex-girlfriend was going to be present and in my mind it became evident to me that my boyfriend would be ashamed of me in front of her and other people. I imagined how everyone would be glancing at me with a look full of pity, they would not say anything to me directly, but they felt sorry for me and at the same time would be embarrassed by my presence.

These thoughts about my inferiority became quite persistent and my mood was very low. Once my boyfriend left for the party, I stayed alone in the apartment and tried to continue reading the econometrics textbook. I tried to understand the text but I started to feel lightheaded and the concept discussed in the paragraphs was slipping away from me. The room seemed too dark and I turned on a table lamp but a sense of enclosing darkness continued. And suddenly it happened – the terrifying experience that had occurred almost twenty years earlier. A sentiment of dread and claustrophobia came over me and I had an urge to run out of the apartment. It seemed that time had stopped and everything outside the room had ceased to exist. The walls were closing in and the space of existence was becoming smaller and smaller. There was also a tremendous sense of loneliness – did anyone know that I existed in this room, would I ever experience human contact again? It was a primal fear – fear of being isolated from the tribe, it was paralyzing. I didn’t know what to do except to call my boyfriend, I needed to hear a human voice, I needed a confirmation from someone that they knew I existed. The voice at the other end of the line did have a calming effect on me and the episode passed, I returned to my studies.

I did not know how to explain what happened to me and I thought that it was due to staying alone on a Saturday evening. It seemed logical that since I was used to going out on the weekend, and previously I had also lived with my parents – so I was not alone in the evenings, this event of staying alone had caused the sense of fear and isolation.  My conclusion was that the graduate program was negatively affecting my lifestyle and that I needed to go out more. This was contradictory to the facts, since I did not go out that evening in the first place due to feeling very inferior, but at the time the conclusion made sense. It’s clear to me now that these were the first symptoms of delusional thinking that would later on develop into psychosis but it would be another three years until I would see a psychiatrist for the first time.

More symptoms and no answers

As I continued with the graduate program, I started to have episodes where I would feel very overwhelmed and suddenly would experience a loss of identity. In those moments I did not have a clear understanding of who I was, what I knew, whether I knew anything at all. I would also loose a sense of having a personality and then a feeling of panic would creep in as I would become convinced that soon I would lose all human contact because having no personality meant that I would not be able to hold a conversation. I would then go in my mind through all my previous interests and that could calm me down a bit and bring me back to reality, but still these experiences of intense fear were happening more and more frequently. Also there were more episodes of feeling very dizzy, not able to concentrate, feeling lightheaded, a sensation of what is usually called ‘brain fog’. These episodes were usually occurring after meals, so I became afraid of eating. My face had also visibly swelled up and I was rapidly gaining weight. At the start of my master’s degree (2012/2013) I was underweight, as I had been my whole life, but by summer of 2014 I had gained almost 20 kilograms. I often had burning eye pain and my eyelashes and eyebrows were falling out. I had so many symptoms that it was very difficult to describe them all together in a coherent story and visits to the doctor did not result in any answers. The only diagnosis that I received at that time, after several doctor visits, was chronic gastritis, acid reflux and IBS.

More graduate school and some antibiotics

After completing my master’s degree for some reason I decided to get even more stressed and went for PhD. Looking back now, it’s clear that by that time I already had serious health issues that were progressing rapidly and I should have focused on investigating them. Maybe I did not want to accept that the problem was very serious and I was hoping it would go away on its own. Also because there were so many symptoms I didn’t even know where to start. I was already told that I had gastritis and acid reflux and was given omeprazole for that. About my swollen eye I was told that the issue does not exist. I was therefore not even sure what to do next – do I keep talking about my stomach pain and abdominal bloating? The doctor already said that was IBS and there was nothing they could do about that. The swollen eye and face symptoms did not exist according to the doctors. The dizziness ? I mentioned the symptom but it was never addressed.

The left side of my face was becoming more swollen, but I was very concerned about my course work, so I only decided to go to the doctor again when I got a shooting pain in my jaw accompanied by a rotten taste. Actually I went to a dentist, not a family doctor. The dentist ended up finding a dead nerve in a tooth and an infection. Soon after that I had a root canal and was given antibiotics for a month. The jaw pain diminished, the infection went away, and my face regained some of its original shape. At that point I really hoped that somehow that was it – the tooth infection was the problem! I wanted to convince myself that the problem was simple and that now it was gone – the dizziness, fatigue, anxiety, the swelling – this all was probably due to a prolonged exposure to tooth infection. Now after antibiotics treatment it should all clear up.

A confusing summer

It’s hard to describe what I was thinking that spring and summer following my antibiotics treatment in January, which was supposed to ‘clear everything up’. My thoughts were all over the place but I remember clearly what I was feeling at that time – anxiety and more anxiety. I was studying economics but I started to panic that I won’t be able to find a job unless I was a programmer, so in addition to my course work I started studying Python. I became convinced that actually I was meant to do computer science but somewhere I made a wrong turn, I had to catch up. This was not the worst idea that I had. More destructive was the thought that my boyfriend had plans to leave me. I did not think that he was cheating on me, it was a more bizarre idea that he had developed a plan together with another girl, whom he rarely saw, that he was going to leave me, but not yet, they were waiting. I am not sure what they were waiting for though, because the idea does not make sense and now I don’t even remember it fully. I do know that the girl was working as a software developer and therefore it was very clear to me that of course he would only want to be with some one who is in computer science. I was not and she was, therefore the girl was superior to me. One day, before one of my exams, I saw that my boyfriend received a text message from the girl. I did see that mostly they talked about some software development topics, but I started to believed that it was sort of a secret code. The message triggered a panic attack and I could not calm down even the next morning. I was supposed to drive to the university to write my exam but I physically could not do it. My boyfriend drove me and when we got there I refused to come out of the car. I was sure that once I came out he would speed away and I would never see him again. He would change the locks on the door or secretly move to another city all together, and he would do all this within the few hours that I would be away. He did finally convince me to go to my exam but it was useless because I barely understood what the questions were about and the whole time I was thinking that I needed to get out of the classroom as soon as possible. I handed in a paper with a lot of blank answers and ran to the bus station. I did end up failing that exam.

Autoimmune Encephalitis Story (part 2)