By Kathryn Cannon
The mind is a powerful force. It can enslave us or empower us. It can plunge us into the depths of misery or take us to the heights of ecstasy. Learn to use the power wisely. – David Cuschieri
One word can change your entire perception without you realizing the significance it holds. That word is Anti-NMDAR encephalitis. This disease transforms a person you once recognized into one with an altered state of self being. The eventual progression of the disease dwarfs those it touches into a childlike state. Researchers are unclear as to the cause of the disease with the exception of a teratoma tumor. A teratoma tumor (video) forms in a woman’s ovaries.
This illness is known to have several stages which can cause difficulty in giving the correct prognosis. It starts off with fever, headaches, vomiting, etc. It then progresses to psychiatric traits such as: anxiety, insomnia, hallucinations, paranoia and withdrawal as described in the article “Clinical experience and laboratory investigations in patients with anti-NMDAR encephalitis.” Further regression results in loss of motor skills, becoming mute, short-term memory loss and a lack of awareness. In many cases people are misdiagnosed by psychiatrists for the symptoms they portray. Following the psychiatric manifestations, the person normally displays abnormal movements and autonomic instability evidenced by constant saliva, irregular breathing, high blood pressure, smacking of lips, etc. For example a patient can display a robotic like movement without showing actual awareness of the capricious action. Research has shown that the antibodies of the patient attack the brain from within further compounding a successful diagnosis. It has taken a lot of guessing, trial by error, and a consensus of research to form a conclusion.
Susannah Cahalan, a journalist for the New York Post, wrote her own memoir Brain On Fire – My Month of Madness. Cahalan wrote in Brain On Fire, “The break between my consciousness and my physical body was now fully complete. In essence, I was gone… This was the beginning of my lost month of madness.” She is not alone in her feelings of losing her entire self to an unknown force attacking her from within, pulling her away from everything that is familiar. Many women who experience the same symptoms go through these exact emotions of feeling foreign in one’s own body.
Imagine that you are coming out of a deep coma. Your sense of who you are, where you are and the time is like a puzzle. You see pieces but you don’t know how they fit together. Cahalan describes it as the world gradually coming into view. It begins as a pin hole of light with the diameter gradually expanding. You are coming out of a state of darkness in which you were ensnared. In the treatment stage about 75% of patients recover fully or may have slight disabilities. For recovery to be complete every individual must go through the stages of illness in reverse order for healing to occur.
In many stories, including Susannah’s, patients with this disease explain how self-conscious they are after recovering. They do not feel comfortable in their own skin along with forgetting how to socialize in a public setting. Recovery from these side effects takes time. Relapses are a known occurrence with this disease, especially for people who did not have a teratoma tumor. “No one knows why certain people, those without teratomas especially, get the disease, and there is no basic understanding of how it is triggered,” Cahalan wrote in Brain on Fire. Sonia Shaheen was the first person in Canada diagnosed with anti-NMDAR in 2008. She has had four known relapses already and is still currently battling the illness. Anti-NMDAR encephalitis is now becoming more widely known thanks to Susannah’s book and the non-profit organization Autoimmune Encephalitis Alliance that she set up. She has her own website at www.susannahcahalan.com with a section provided for people to share their stories involving anti-NMDAR encephalitis.
It is the opinion of the contributing authors of the article “Clinical experience and laboratory investigations in patients with anti-NMDAR encephalitis” that future studies should clarify timing of the immune response, the best treatment approach, and strategies to accelerate the process of recovery. Recommendations for further research include studies on the effects of the anti-NMDAR antibodies at the cellular, synaptic and circuit levels. It has been suggested that further studies involving animals would be necessary to fully understand how the antibodies affect brain functions. It is obvious that more research needs to be conducted linking the neurological and psychological components of this disease instead of focusing the research on them individually.
Cahalan, Susannah. Brain On Fire My Month of Madness. New York: Simon & Schuster Paperbacks, 2012.
Prof Josep Dalmau, MDa, , , Eric Lancaster, MDa, Eugenia Martinez-Hernandez, MDa, Prof Myrna R Rosenfeld, MDa, Prof Rita Balice-Gordon, PhDb. “Clinical experience and laboratory investigations in patients with anti-NMDAR encephalitis.” ScienceDirect (2011): 63-74.
Update 9/18/2015 – Edited by Paige Jarreau