“Brain on Fire” – A diagnostic odyssey

brain-on-fireI just finished reading a really gripping and emotional story—Brain on Fire: My Month of Madness by journalist Susannah Cahalan. (Soon to be a movie!)

As a twenty-something cub reporter in New York, Ms. Cahalan began experiencing strange, seemingly unconnected symptoms, such as forgetfulness, paranoia and the sensation that bugs were crawling on one side of her body.

The details of her weeks’ long medical journey—which she had to piece together from medical records, her parents’ journals, and the recollections of friends, doctors and nurses because she couldn’t remember most of it—are a pretty frightening look at today’s fragmented healthcare system.

Passed from one doctor to another, from one specialty to another, Cahalan was subjected to multiple needle jabs, xrays, MRIs , CT scans, EEGs, and ultrasounds as they tried to figure out what was wrong. Despite all the tests, treatments and different diagnoses (bipolar disorder, alcohol dependency, schizophrenia, to name a few), her conditioned worsened until she was near death and her parents prayed for a miracle.

Her mother, concerned that the doctors were giving up, reached out to another neurologist and finally got the diagnosis that would start her daughter on the path to a slow recovery.

The diagnosis? Anti-NMDA-receptor autoimmune encephalitis.

OK, I admit I had never heard of it. But as she researched her book, Cahalan learned that it was neither a new disease nor particularly rare. She admits her frustration that the first neurologist she saw, a Dr. Bailey, was not more quick to make the diagnosis.

Yet Dr. Bailey, considered one of the best neurologists in the country, had never heard of it. When we live in a time when the rate of misdiagnoses in the United States has shown no improvement since the 1930s, the lesson here is that it’s important to always get a second opinion.

While he may be an excellent doctor in many respects, Dr. Bailey is also, in some ways, a perfect example of what is wrong with medicine. I was just a number to him (and if he saw thirty-five patients a day, as he told me, that means I was one of a very large number). He is a by-product of a defective system that forces neurologists to spend five minutes with X number of patients a day to maintain their bottom line. It’s a bad system. Dr. Bailey is not the exception to the rule. He is the rule.

Cahalan was extremely lucky that she recovered as well as she did. Many patients who suffer from this disease and do not receive immediate treatment are left with neurological impairments.

Worst case, they are misdiagnosed as schizophrenia, heavily medicated with anti-psychotics, and locked up on a psychiatric ward.

Delayed treatment aside, she also touches on the high cost of medical care in this country. As I read through the book, I have to admit I kept thinking to myself, “I hope she’s got good insurance” and “I wonder how much that will cost?”

It had cost $1 million to treat me, a number that boggles the mind. Luckily, at the time I was a full-time employee at the [New York] Post, and my insurance covered most of the exorbitant price tag. I also had a support system in place. My family was in the fortunate situation of being able to pay out of pocket anything that the insurance company wouldn’t cover or reimburse. Unfortunately, there’s often not a safety net in place for those with life-long psychiatric conditions, who are unable to hold jobs and must make do with disability payments and Medicaid.

Brain on Fire is both fascinating and depressing. It highlights the best and worst of American medicine, and testifies to what I’ve posted about before—don’t go to the hospital alone!

Related post: Hospital safety tips


Frugal Nurse

Interested in more medical mysteries? Here are a few of my favorite books:


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