Understanding Anti-NMDA-Receptor Encephalitis: A Personal Journey

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THE AUTOIMMUNE DISEASE with which I was ultimately diagnosed, anti-NMDA-receptor encephalitis, varies wildly in its presentation. For most people, it begins with flu-like symptoms, though it's unclear if patients initially contract a virus related to the disease or if these early symptoms are a result of the disease. Typically, about two weeks after onset, psychiatric problems--such as paranoia, insomnia, mania, and grandiose delusions--take hold, so most patients seek out mental health professionals. Seizures occur in 75 percent of patients, which is fortunate if only because this gets them to a neurologist. Next, language and memory deficits arise. NMDA receptors are vital to learning, memory, and behavior. Located on neurons all over the brain, they receive instructions from neurotransmitters, either exciting a cell, encouraging it to fire an electrical impulse, or inhibiting it. These neuronal conversations are at the root of everything we do. …show more content…

NMDA-receptor-seeking antibodies handicap a neuron's receptors so that they're unable to send and receive signals. When NMDA receptors are compromised, the outcome can be disastrous. A decrease in NMDA receptors of, say, 40 percent might result in psychosis; if they drop by 70 percent, it might cause catatonia. By the time I was a patient at NYU, University of Pennsylvania neuro-oncologist Joseph Dalmau--who, in a 2007 paper, introduced anti-NMDA-receptor encephalitis to the world--had designed two quick diagnostic tests for the illness. After he received samples of my spinal fluid, I became the 217th person to test positive (today that number is in the thousands). By then, I had already entered catatonia, the height of the disease, which precedes breathing failure, coma, and sometimes death. The doctors caught it just in

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