Megan’s Story, 22 years old, France
Hello, my name is Megan,
I am French, a student and I am 25 years old. With these few words I will tell you “my story”.
In 2016, two months after my 22 birthday, I had autoimmune encephalitis with anti-NMDA receptor antibodies; Said like that (put a name on what I got) it gets attention but in actuality until today the vast majority of people I know have never heard of it. In “simpler” terms this disease corresponds to inflammation of the brain; cells normally supposed to contribute to my “well-being” have created antibodies that have attacked my brain.
All this while I had absolutely no medical history.
You know, one of the peculiarities of this disease is that it causes a loss of memory in the short term. I have some “flashes” of this period but the biggest lines are told to me by my family who were present day after day or from my medical file.
Having always loved traveling and constantly wanting to discover new horizons, I lived alone in a studio and studied in the Netherlands in the city of Groningen when things “changed”. At first everything was going well, I was going to class, I was reviewing the exams alone or with one of my friends there, not a day passed without speaking to my parents (who lived in Guadeloupe, a small island in the Caribbean).
Then there were changes … When I started my days, I had like impressions of “already seen”. During classes when I had to answer multiple choice questionnaires, I knew the correct answer, but I ticked a box (not the one needed), I was aware that the answer was wrong but I could not answer to do what was necessary to modify it.
When I got home after school, I continued working without even realizing that I was not sleeping or very little.
I had repetitive tremors and respiratory discomfort, which always ended up happening so nothing alarmed me more than that.
I remember one day I felt so weird that I said to one of my friends, “I feel like I have a brain tumor,” he laughed, thinking I was joking (his nature being to rave and laugh), but I really felt that something was wrong in my head.
Then one evening, at home alone, as every evening to review for my exams, I felt weird, not as usual, and something really strange happened: I had a lot of fluids without being able to stop, my whole body was shaking and unable to breathe during these phases which were now repeated every 2 minutes.
I managed to film one of my seizures and to send the video to my doctor who answered me “it’s nothing, it is the stress of exams”. Not having the habit of stressing for exams I sent this same video to my mother asking (not knowing what it was) if she found it normal? She phoned me and asked me to call the emergency room … I did not even know the emergency number in Groningen! I was very weak, but I managed to get a neighbor at 3am, which, I thank her, opened her door and contacted the UAS immediately on seeing me. Once the UAS arrived at my home, I again had seizures, they lay me down and injected me with I do not know what product, which calmed me anyway. Then they asked me since when was I epileptic …? I told them that I was not epileptic, but they assured me that I was having epileptic seizures and transported me to Groningen University Hospital.
The friend I saw with most of the time came to visit me, bring me clothes and he also gave me one of his stuffed animals, a unicorn to watch over me according to him.
Hospitalized 2 days there they found nothing, and I felt “good” again so I went home.
My mother arrived in the wake, with my cousin, worried about the video, they took me back to Paris in France.
Then, my mother told me that my father and my brother would arrive the following days. At this news, I was gripped with a sort of panic that seized my whole body like a huge anxiety attack. This is true after all, if my family had flown to see me it is because I probably had a big problem! They took me to see a doctor, but until then I was fine … so they decided that I would go back to Guadeloupe with them, we slept in the hotel and had to fly in the days that followed. . At the hotel I had an endless cough and seizures of madness (I locked my brother outside the room, I could not stand his presence!).
They contacted the firefighters who brought me to the hospital, where they made me drug tests (and yes I was studying in the Netherlands so the first doctors were convinced that all this was due to drugs) except that I did not smoke, not even tobacco, so obviously they did not find anything, my test results were perfect. I had a series of PetScan, MRI, lumbar puncture, still nothing.
I also went to psychiatry, seen by professors who certified that my problem was not their responsibility, that it had nothing to do with psychiatry. After all this and no diagnosis I was simply sent home. But there I had dementia and inappropriate behaviours; I laughed while there was nothing funny, I did not answer more of my body and dropped me anywhere. Sometimes I would even undress myself, no matter where; which again led me to psychiatry.
I was finally hospitalized in neurology.
I had the foreign language syndrome; I spoke and understood only English and Dutch and was unable to understand or speak my native languages French and Creole.
I saw all these doctors around my bed who asked me again and again my name, I kept saying MEGAN! but they continued, they insisted, I ended up tired of answering … it was only after (during my recovery) that I knew that in fact I thought to answer them but in reality I did not tell them absolutely anything.
I lost the use of speech and then of walking. I no longer ate and was fed through a nasal tube. By dint of research via blood tests, my body was filled with bruises, the veins in the arms being scarce they sometimes even happened to inject my feet.
I had severe attacks in the hospital, so that they happened to tie my hands and feet in bed and inject me with a sedative as they could not control me; my mother told me that I had an almost superhuman strength when my seizures took me.
I even managed to stop recognizing my family members …
I was lucky to have my family at my side, more present than ever.
My illness brought me a lot of difficulties but imagine witnessing all this and being helpless. That was my parents and my brother – my family.
They were there to see my health deteriorate, to hear the doctors say they did not understand what I had, so they did not know how to cure me …
Your child, your sister, your cousin, your niece, your granddaughter, whom you have always known in top form and overnight sick without any medical history.
They did not stop at the helplessness of doctors in my case.
During all my hospitalization, every day my family was present, mother, father, brother, aunts, uncles, cousins …
The wall of my hospital room, facing my bed, so that I have a direct view on it, was lined with photos of all the members of my family who had come to see me, as well as people asking for information – for news of me ….
My brother, Masseur Physiotherapist and Osteopath, massaged me and made me do exercises even if I was bedridden and I did not walk,
My mother and father took turns sleeping with me at night in the hospital, my father had to leave for work, my mother was staying with me every night – what was left of her daughter.
I received many visits from family and relatives but sincerely I could not tell you who was there or not if my parents had not told me.
I was hospitalized in July but it was not until September that doctors finally found what I had, put a name on my disease and gave me an adequate treatment (RITUXIMAB, a kind of chemotherapy) so that I could get back to “as before”.
I started talking and walking again and I went back to Guadeloupe with my mother to my family where I did my rehabilitation in a clinic. In this clinic I relearned things (joy, sadness …), to communicate, to walk properly.
I was lucky to be able to find all my faculties without visible sequelae.
You know, the disease is unpredictable, but we heal faster when our rage to live the people around us and support us are determined to see you out and find the joy of life you had before. I am fortunate to have an extraordinary family who supported me and believed in my recovery when the same doctors did not believe in it and I would never thank them enough for that!
A big thank you to my three pillars, my mother, my father and my brother.
It is a new life that has been offered to me and I live fully surrounded by people I love, because this disease has given me a different vision of life. I left Guadeloupe (where I was doing my rehabilitation, near my family) to resume my studies. A choice which hardly reassured my parents; after that it understands; I was already studying away from them when everything started. But I’m still part of it. I took the course of my life, I lived through my courses at school unforgettable experiences, I met extraordinary people. Holds a Bac +3 in International Trade and today the happy mother of a little girl.
Through my testimony, I hope I can reach out and sensitize a large number of people so that this disease is known and can help treat patients who are affected faster than I have been.
French version is available at the following link / La version française est disponible au liens suivant: