medical mystery

The DO Book Club, March 2020: Brain on Fire

Susanah Cahalan details her battle with anti-NMDA-receptor encephalitis, a rare disease that a neurologist had to dig deeper than her list of symptoms to identify.

Welcome back to The DO Book Club! For March, I read Brain on Fire: My Month of Madness by Susannah Cahalan. If you’ve read this one, please share your thoughts in the comments below. And if you’d like to write a book review for a future month, please email me at abrown@osteopathic.org.

Plot summary

Cahalan, a journalist for the New York Post, tells the story of her 2009 fight with anti-NMDA-receptor encephalitis, a rare autoimmune brain disease that was only first identified in 2007. She begins the book by explaining how she gradually became disoriented and started having seizures and showing signs of psychosis and paranoia.

Since the disease was less well-known at the time, physicians misdiagnosed her with alcohol withdrawal first, then bipolar disorder. All neurological exams came back normal, but she became catatonic and completely lost control of her thoughts and actions.

Calahan has no memory of a significant portion of her illness. To tell the part of the story that she has no memory of, she relies solely on anecdotes from doctors and family and footage from her 28-day hospital stay.

In terrifying detail, she describes her frequent violent episodes, escape attempts and panic attacks. All the while, infectious disease, virus and autoimmune panels all came back normal. Her condition may have continued to remain a mystery were it not for her first neurologist seeking help from one of his colleagues, Souhel Najjar, MD.

A spinal tap showed that her brain was inflamed, so to identify where in particular, Dr. Najjar had her do a clock test, in which patients (usually with Alzheimer’s disease) are told to draw the numbers on a clock as well as they can remember them.

When she only drew numbers on the right side of a wobbly oval, it proved to Dr. Najjar that the inflammation was on right side of her brain. It also explained the numbness on the left side of her body, as well as her hallucinations and paranoia. A brain biopsy would confirm this later, and finally put her on the path to full recovery and a normal life again.

Interesting tidbits for DOs

So, what is anti-NMDA-receptor encephalitis? It’s an inflammation of the brain caused by antibodies that, in part thanks to this book, is now caught and correctly treated far more often than it used to be. Dr. Najjar estimates that prior to her case, about 90% of people suffering from it went undiagnosed. Roughly half of these cases are associated with ovarian teratomas, but what causes the other 50%, including Cahalan’s, is basically still a mystery.

Symptoms, as they did in Cahalan’s case, initially present as psychiatric (anxiety, insomnia, fear, delusions), which usually leads patients to seek help from mental health professionals first. Seizures follow for most, which help redirect the course of treatment, but even so, 20% of patients are permanently disabled, and 4% die.

Treatment involves oral steroids, plasma-exchange and immunosuppression therapies, as well as cognitive and speech rehabilitation. But as she describes, it is a long, difficult journey to fully regain one’s personality and abilities.

If you’re interested in learning more, Dr. Najjar has taken this several steps further. He’s published research that suggests that autoimmune-related brain inflammation may be behind certain psychological conditions like schizophrenia.

Notable quotes

While Cahalan doesn’t remember much of her ordeal personally, she is very complimentary of Dr. Najjar’s approach to patient care, saying he spoke to her directly like a friend and had a personal, heartfelt bedside manner. Dr. Najjar evidently took a very whole-person approach to her case, taking full account of her medical history rather than primarily zeroing in on her present symptoms, as previous caregivers had done.

“Dr. Najjar always stressed the importance of getting a full health history from his patients. (‘You have to look backward to see the future,’ he often told his residents. As my parents spoke, he took note of symptoms … that the other doctors had not explored, at least in one full picture. He jotted these all down as key findings” (p. 128).

The clock test, Cahalan writes, was a breakthrough Dr. Najjar could only reach because he was willing to dig deeper than her list of symptoms.

“Dr. Najjar, beaming, grabbed the paper, showed it to my parents, and explained what this meant … this was finally the clue that everyone was searching for. It didn’t involve heavy machinery or invasive tests; it required only paper and pen” (p. 132).

Takeaways

For physicians in particular, this is an an invaluable look through the eyes of a patient and her loved ones. Cahalan does a very good job portraying her experiences in spite of her lapses in memory, and grounds the reader in a real sense of human vulnerability to which she alludes towards the end.

It can be difficult to read through at times, so I recommend taking some breaks, but it is nonetheless an eye-opening story. Chloë Grace Moretz stars in a movie based on this book with the same title that was released on Netflix in 2016. I’m not sure I can stomach the book and the movie together, but if the movie is as true to life as the book is, you probably can’t go wrong picking one or the other.

April’s book

For April, The DO Book Club will be reading The Body: A Guide for Occupants, by Bill Bryson. We encourage all who are interested to read along!

As a reminder, if you read Brain on Fire, February’s Book Club pick, Lifespan, or any previous Book Club selection and want your reflections to be shared in future posts, or want to write your own book review for a future month, please leave a comment below or email abrown@osteopathic.org.

Happy reading!

Related reading:

Psychiatric disorders present in 15% of patients with chronic dizziness, JAOA study finds

Stroke intervention team brings life-changing techniques to patients

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