Anti-N-methyl-D-aspartate receptor (anti-NMDAR) encephalitis is characterized by swelling of the brain caused by a strong autoimmune reaction – linked to the presence of anti-NMDAR antibodies. The disease, also called “Brain on Fire” and identified in 2005, became more widely known through a book, then a film. Anti-NMDAR encephalitis is rare and mainly affects young adults. Symptoms begin with headache, fatigue and fever and progress to confusion, memory loss, problems moving, changes in behavior and personality, trouble thinking or speaking, hallucinations, seizures and even loss of consciousness.
The condition may be misdiagnosed as schizophrenia or bipolar disorder.
Although ovarian tumors and anterior brain swelling due to the herpes simplex virus have been mentioned, the causes of the disease remain unknown and poorly understood.
Lead author Dr. Maarten Titulaer of Erasmus University Medical Center, a member of the American Academy of Neurology, reports that while more than 80% of patients treated for anti-NMDAR encephalitis return to independent and autonomous life after 1 to 2 years, most still report persistent cognitive, thinking and memory problems, as well as social difficulties.
3 years at least to recover
The study followed 92 participants with an average age of 29 years who were diagnosed with anti-NMDAR encephalitis before 2023. The analysis included medical records and physical and neuropsychological examination results. A subgroup of 85 participants underwent thinking and memory tests to measure memory, language, attention, executive function and how perceptions of the world were constructed. 87 participants also completed assessments about their ongoing symptoms. The analysis of these different data reveals that:
-- scores on thinking and memory tests improve over time;
- the fastest improvements occur during the first 6 months;
- improvements then continue, but more slowly and up to 3 years after diagnosis;
- after 3 years, 34% of participants still present some form of cognitive impairment;
- after 3 years, 65% still have scores below average in one or more domains of cognition, with memory and language being the most affected functions;
- after 3 years, participants still report disturbances in emotion, social functioning, energy levels and quality of life;
- finally, 30% of participants did not return to their studies or work and 18% needed adjustments to resume these activities.
In summary, recovery from anti-NMDAR encephalitis takes years, and often leaves persistent memory, emotional, and social problems.
“It is imperative to identify these subtle cognitive, social or emotional symptoms, the impact of which on study, work and social life can be immense.”
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