Wednesday, January 8, 2020

Cahalan, Susannah, Brain on Fire - My Month of Madness (Prince Frederick, MD: 2012), Read by the Author, 7 CDs.

(Spoiler Alert:I discovered late in the set of disks that I had a special interest in this book: it turns out that suffered from an autoimmune disease just as KK did and Annette does.)

The author was a reporter for the New York Post when the events the book describes happened in 2009. For the next few months she gathered all records she could find of the incident (hospial records, family notebooks, etc.) and then she describes in remarkable detail the episode described by the title.

It was an ordinary day when Susan Cahalan decided that her Hells’ Kitchen NY apartment was under attack by bedbugs, despite the fact that she had no identifiable bites and a licensed exterminator inspected her apartment and told her it was bedbug free.  Then there were the strange light patterns in Times Square as she was going to work.  Before long her behavior became so bizarre that her family checked her into New York University where she was placed on the epilepsy floor of the neurology unit and her long diagnostic ordeal. 

Her labs, remarkably, were clear of any usual causes of the seizures she was experiencing, except that her spinal tap showed abnormally high levels of white blood cells (immune system components) in the cerebrospinal fluid.  Extensive tests by the NY State Health Department Lab failed to find any of a large battery of bacterial or viral pathogens that may have produced mental symptoms.  For a few days her case was in limbo.  However, fate intervened to find a solution: her primary neurologist was replaced.

When he was taken off the case another neurologist, Dr. Nadjar, happened to consult on the case and he recalled a disorder recently described by a Dr. Dalmal.  Dalmal’s disorder appeared to be an autoimmune disease inside the brain.  It has since been designated as Anti-NMDA autoimmune disorder.  Since antibodies don’t normally cross the blood-brain barrier, it was considered controversial, so Dr. Nadjar said that a brain biopsy was required to confirm the diagnosis.  The family was in a turmoil, since removing a piece of the brain is a risky procedure, but the obvious distress of their daughter and the failure of conventional treatments to provide her any relief provided a justification for the risk.

The samples were sent to Dr Dalmal’s lab which confirmed that she was the 210th patient in the world to be confirmed with the disorder.  The treatment had a familiar sound, since it was a similar (but not identical) treatment administered to my daughter: primarily steroids and IgG infusions.  She recovered completely (but slowly), and then spent three years writing the story of her tribulations.

The writing is clear and she is a good storyteller.  She has recently brought out a book called The Great Pretender about the psychologist who in the early ‘70s brought the whole apparatus of psychiatry and mental hospitals into question. 

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