I’m on Fire!

By Courtney Healy

I am her powerhouse. I’m working against her in mysterious ways. No one can figure out why I am making her act in such a strange way, not even doctors. Her body is fighting against me. I am slowly making her seem crazier and crazier to her coworkers, family and boyfriend. What they cannot figure out is why I am making her so sick. I am Susannah Cahalan’s brain.

I am unable to explain to Susannah why she is suddenly feeling lost. Susannah and I are gradually becoming out of sink with our routines. Susannah is uncharacteristically unprepared for work. She is out of touch with coworkers and reality. I’m telling her to be skeptical of things she normally isn’t concerned about, like her ability to perform and be fully engaged in her work/ love life. I’m telling her not to worry; it is probably just the flu.

Susannah’s family is growing increasingly concerned with her mental state. I cause Susannah to have mood swings, seizures and moments of rage. Her new states of panic and despair are also my doing. I tell her that people are saying bad things about her when they really aren’t. I am unable to help her recognize her own family members and when I do allow her to do so, I make her scared of them.

Susannah and I have countless tests preformed on us worth thousands of dollars to help us identify why I am malfunctioning all of a sudden. Numerous times over a course of a few months we are told that everything is “normal” and nothing is wrong.

That was our status until Dr. Najjar came into the picture. Dr. Najjar gave Susannah a piece of paper and a simple test. He told her to draw a picture of a clock. I know I remember what a clock is but, I am having a difficult time translating it to Susannah. I am finally able to give Susannah what she needs to draw the clock, but she draws only half of it. Dr. Najjar is given what he needs to diagnose Susannah.

Dr. Najjar concluded that parts of me are being affected by a rare disorder called Anti-NDMA-receptor encephalitis, an autoimmune disorder. This was causing the right side of me to become inflamed which was causing a number of my symptomatic behaviors. According to Dr. Maarten J Titulaer (2013), from the Department of Neurology at the Hospital of the University of Pennsylvania, this disorder starts showing in hosts, like Susannah, by presenting them with  “acute behavioral change, psychosis, and catatonia that evolve to include seizures, memory deficit, dyskinesia’s, speech problems, and autonomic and breathing deregulation” (p.157-165). The disorder largely affects the part of me called the hippocampus, which is in charge of long-term memory formation, storage, and organization.

Most of the time “the brain is a symphony of 100 billion neurons,” (Cahalan 2012, pg. 41). But that’s not the case for me right now. Susannah’s immune system is sending signals to attack my NMDA receptors.

NMDA receptors are proteins that control electrical impulses in the brain. Their functions are critical for judgment, perception of reality, human interaction, the formation and retrieval of memory, and the control of unconscious activities (such as breathing, swallowing, etc), also known as autonomic functions. – The Anti-NMDA Receptor Encephalitis Foundation, 2015

In some cases, but not in Susannah’s and mine, this disorder is associated with tumors, which in women are typically found on their ovaries. According to the Anti-NMDA Receptor Encephalitis Foundation, “[i]t is thought that antibodies are initially formed against NMDA receptors found within tumors, and then attack similar-looking receptors in the brain producing the symptoms and signs associated with anti-NMDA receptor encephalitis.”

So how can I get better to help Suzannah return to her former self? Dr. Najjar offered a solution that would help us. I would be treated with a steroids, IVIG treatment and plasmapheresis. The steroids would help reduce the inflammation I was seeing on my right side. The palsmapheresis would flush Susannah of the antibodies that are attacking me (Heitz, 2014, p.1). IVIG treatment contains a concentration of antibodies that would help Susannah’s immune system from firing attacks on me.

We finally had an answer to the symptoms that I was afflicting on Susannah and her family. Susannah and I were released from NYU’s hospital after a month of confusion and lack of answers. For now, Susannah and I will continue on our uncertain but more hopeful journey. That is of course, under the close watch of a team of doctors.

 

References:

Cahalan, S. (2012). Brain on fire: My month of madness. New York: Free Press.

Heitz, D. (2014, January 6). Plasmapheresis. Retrieved September 13, 2015.

Titulaer, M.J., McCracken, L., Gabilondo, I., Armangue, T., Glaser, C., Iizuka, T., …Dalmau, J., Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: An observational cohort study. (2013).Science Direct, 12(2), 157-165. Retrieved September 10, 2015, from Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study

What is Anti-NMDA Receptor Encephalitis? (n.d.). Retrieved September 13, 2015.

 

Update 9/18/2015 – Edited by Paige Jarreau

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