Anti-LGi1 Autoimmune Encephalitis Lived Experience- Juliette’s Story

My name is Juliette. I am 23 years old, and I have just completed my five years of studies in International Hospitality Management. I currently live in Madrid. I am the youngest in my family, having two older sisters. I’ve been fortunate to travel since my childhood and live abroad in Madagascar, Mauritius, Belgium, Indonesia, and Cambodia. These cultural experiences have contributed to my growth and shaped the person I am today. My story, though short and perhaps more “fortunate” than some others you might read, has a happy ending.

Towards the end of 2021, things took a strange turn. Looking at old photos and despite comments from some close ones, I realized I had lost weight. I was no longer myself, crying frequently, and my mental sharpness had significantly diminished.

In December 2021, my physical weakness intensified with unexplained weight loss. Shortly after my return to school in January 2022, I contracted an almost asymptomatic form of COVID-19. It was at this point those things quickly deteriorated. I don ‘t exactly remember the course of events between late February and late April; it became blurry, almost non-existent, leaving only vague and unpleasant memories. This well-known symptom of memory loss was indeed present.

February marked the true beginning of the illness, with the onset of absence seizures. These moments of “disconnect” were characterized by a temporary sensation of leaving my body, accompanied by an electric shock to the head and a metallic taste in the mouth, similar to episodes of “trances” lasting about 10 to 15 seconds. Initially, these episodes occurred when I was alone, and I didn’t talk to anyone about them. However, their frequency increased every day. I later learned that these were focal epilepsy seizures, tiny but impactful. I had crying spells at the psychiatrist’s, mixed with fatigue so intense I couldn’t explain it. That’s probably why he also diagnosed me as depressed.

But I always knew deep down that the problem wasn’t that, that it went deeper and that something was destroying me from the inside. This thing had a hold on my body and my thoughts and there was absolutely nothing I could do about it. Orals at school became complicated, and sometimes I felt like I was leaving my body when I stood in front of my classmates during my presentations, until all I could see was an opaque white filter in front of me.

This period was also marked by the onset of insomnia and trembling episodes. The absence seizures took up more space in my life, adding to a kind of depression, a state I had never experienced before. On March 2, I finally shared my concerns with my sisters, addressing the issue of seizures and expressing my fear of going insane (as I couldn’t sleep at night, I would walk alone in my apartment). At that time, I hadn’t informed my parents yet, fearing to unnecessarily worry them.

Advised by my sisters and friends, I consulted my general practitioner without informing my parents. After verbally describing my “symptoms” she hesitantly mentioned the possibility of a mild depression or epilepsy, recommending a consultation with a psychiatrist and possibly a neurologist. A few days later, the psychiatrist confirmed depression and prescribed an antidepressant and Valium for sleep disturbances supposedly linked to anxiety.

The anxiolytic proved ineffective, trembling episodes persisted, and my sleep was disturbed. My nights unfolded in a cycle of fragmented sleep, making it difficult to concentrate in class and exacerbating my absence seizures. On March 17, 2022, thanks to a radiologist friend of my family, I urgently obtained an appointment for a cerebral MRI due to the “seriousness” of the situation.

The MRI revealed cerebral edema, possibly explaining my symptoms. My medical journey then accelerated with consultations with a neurologist and an electroencephalogram (EEG), which showed slight signals of epilepsy. The diagnosis became more precise, and I was put on a low dose of Levetiracetam and anxiolytics.

On April 1, I was admitted to the epilepsy department at the hospital for in-depth examinations, including camera surveillance, blood tests, and a lumbar puncture. This period was marked by intense migraines after the lumbar puncture, as well as long moments of disorientation.

On March 17, during an Easter Mass in the south of France, my first epileptic seizure struck. I don’t remember the incident; my parents told me everything. But the collapse, the rolling eyes, and the chattering of teeth marked the beginning of the episode. A man, whose son was epileptic, timed my seizure, allowing for a quick intervention. This event was a shock for my family, who had never faced such a situation. Then another seizure occurred, the holidays were cut short, and I was informed of my condition at the hospital where I had undergone my initial tests.

On April 22, I was admitted to the epilepsy department for in-depth tests, including blood tests, extremely exhausting cognitive tests, an electrocardiogram, and an electroencephalogram. The results revealed ‘LGi1 autoimmune limbic encephalitis’, a rare disease unknown for most.

From May 4, I started my first immunoglobulin treatments, followed by six others until November 2022. These hospitalizations introduced me to hospital life with its challenges, difficult moments of pain, loneliness, and great fears of never returning to my “real” self, but also moments of joy with my family. This experience has undoubtedly left its mark on my family, which has always been there and has bonded us more than anything, all five of us.

From my fourth treatment onwards, I finally felt a significant improvement in my overall cognitive state, inner well-being, but especially in my personality. The treatments finally ended, and my latest tests showed improvement, with my cerebral edema gone and my antibodies negative.

Today, I am doing well. I continue to take my epilepsy medication that I’ll probably take forever. I have been psychologically supported and have undergone acupuncture and sophrology sessions to manage some of the sequelae of encephalitis. I finished all of my immune treatments in July 2023 and my last cognitive check-up in March 2024 (the results were really good).

This journey has not only reshaped my perspective on life but has also underscored the unpredictable nature of challenges that can befall anyone, regardless of age.

It is crucial to raise awareness about rare diseases and epilepsy, which are still too unknown in our society. By increasing awareness, we can better support individuals going through similar challenges and move towards a world where nobody feels isolated in their journey.

(published June 2024)


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Page Created: 27 June 2024
Last Modified: 15 July 2024
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