A chronic illness recovery story from the Netflix film BRAIN ON FIRE (anti-NMDA receptor encephalitis)

Brain on Fire is an autobiography that was turned into a Hollywood movie. A New York Post writer named Susannah Cahalan suffers a mysterious disease that causes her to experience seizures, to have personality changes, and other symptoms. Because of the seizures, a doctor gaslit her by repeatedly misdiagnosing her with alcohol withdrawal (which can cause seizures). When her symptoms didn’t go away, it was becoming clear that she wasn’t suffering from alcohol withdrawal.

Her tests were coming back normal. She was later misdiagnosed with schizophrenia (due to her erratic behaviour) and they tried to commit her to a psych ward. She finally got an anti-NMDA receptor encephalitis diagnosis as she had auto-antibodies against the NMDA receptor.

She was able to return to work after she started getting treatment. However, I suspect that she still has health problems. She’s probably on immune-suppressing drugs which come with side effects. It’s not clear to me if she has symptoms unrelated to her treatment.

You can get tested for anti-NMDA antibodies; the test is commercially available as the condition is getting more recognition.

  • Note that some healthy people have auto-antibodies against NMDA. If you get tested for enough auto-antibodies like NMDA and others, the tests will find something. It doesn’t necessarily mean that you have an autoimmune condition.
  • At the same time, autoimmune diseases are massively underdiagnosed. They often go underdiagnosed for years until the patient stumbles across a specialist/doctor who actually knows about their autoimmune condition and how to diagnose it.
  • Some people have the autoimmune condition even though they test negative on the auto-antibody test.
  • New-onset autoimmune diseases seem to appear at high rates in Long COVID and post-vaccination patients. Some survey data here.

The formal diagnosis has made a huge impact on the New York Post writer’s life because she isn’t being imprisoned in a psych ward. If you have the symptoms, it’s probably worth checking out.


Signs & Symptoms

Anti-NMDA receptor encephalitis causes a wide range of symptoms varying in severity. Patients typically start with less severe symptoms, and then rapidly progress to a condition requiring hospitalization. The list below includes the most common symptoms. Most patients with this disease exhibit nearly all of these symptoms; it is extremely uncommon for patients to have only one or two.

  • Behavior (paranoia, hallucinations, aggression, etc.)
  • Cognition
  • Memory Deficit
  • Speech Disorder
  • Loss of Consciousness
  • Movement Disorder (rhythmic motions with arms or legs, abnormal movements with the face or mouth)
  • Seizures
  • Autonomic Dysfunction

From Anti-NMDAR Encephalitis | Center for Autoimmune Neurology | Perelman School of Medicine at the University of Pennsylvania

Anti-NMDA receptor encephalitis

This condition has some support groups if you Google it.

Movie trailer