Balance issues, anxiety, paranoia, motor coordination issues, numbness in the arms and legs, mood swings, speech issues, sensitivity to light and sound, and eventually becoming withdrawn and detached, all in a short period of time. Sound familiar? Brain on Fire is a book by Susannah Cahalan, a normal 24 year old who suddenly develops these mysterious symptoms and deteriorates rapidly. You might be surprised that she does not have OMS, but rather another rare disease that bears striking resemblance to OMS. However, the symptoms are so close, that for the first time we may have a vivid glimpse into what Keira may have experienced when first diagnosed. In fact an older OMS patient we know was in tears through parts of this book because of many of the similarities with OMS.
Another interesting coincidence is that the disease in this book was only officially identified in 2007 by a Dr. Joseph Dalmau, a neurologist who has also been interested in OMS research.
As Keira’s mom I have always wondered how Keira felt during our time in the hospital. It was heart-breaking to watch my 18 month-old have her body start turning on her. She lost the ability to feed herself, started tripping and falling and eventually stopped talking. Even worse while we were in the hospital she used to wake up in inconsolable states of despair. She would look through you and just cry. I remember telling my sister that if it wasn’t 2010 they might send us away to see a priest instead of a doctor.
Brain on Fire is the true story of Susannah Cahalan's "lost month of madness," most of which she remembers imperfectly or not at all. However, since she is a reporter for the New York Post, she has been able to piece together much of what happened by speaking to doctors, nurses, friends, and family; reading "thousands of pages of medical records"; consulting her dad's journal and her parents' "hospital notebook"; watching video footage of herself; and trying to reconstruct any impressions that she still retains.
Cahalan's symptoms were a mixture of the physical (weakness on her left side, difficulty speaking) and the mental (paranoia, violence and psychosis). Her condition was undiagnosed for an agonizing period of time, much like most OMS patients.
Some of her physicians thought she was suffering from alcohol withdrawal despite the fact that she told them she was only an occasional drinker. She came very close to being diagnosed as a schizophrenic. Her family insisted that her illness had a physical cause and only with this advocacy was she admitted to NYU.
One other really interesting coincidence in this book is that Dr. Josep Dalmau who first categorized the disease that Susannah had, Anti-NMDA receptor encephalitis, has also expressed interest in researching OMS.