By David Fertitta
He keeps looking around the room, looking for something to occupy his mind. Each new fear races through his mind. He’s been waiting in the stiff hospital chair for hours slowly awaiting any response from the doctors.
The past few weeks have been torture. His friends have commented on his deteriorated memory beyond the usual misplacement of his keys to completely forgetting things that happened for an entire day. Next came these involuntary spasms, but he had assumed all of this was just due to increased stress lately. It wasn’t until last night that it was clear that he needed to go to the hospital when he began seizing uncontrollably. Since the seizure, it’s been difficult speaking making him feel even more trapped in his thoughts than he normally would.
The preliminary talk with the doctor suggested it’s clear that it’s some sort of neurological problem. This doesn’t come as much of a surprise given recent changes in behavior that his friends have noticed.
A physician provides an update. It’s suggested that he needs a cerebrospinal fluid (CSF) examination in order to determine what’s wrong. That is, samples of the fluids surrounding his spinal cord and brain need to be taken in order to help diagnose his issue.
Only a local anesthetic is used to numb the area of the injection to retrieve the cerebrospinal fluid. Without sedation, there’s no escape from his apprehensions during the procedure. The procedure goes well, but he’s still trapped in his own thoughts.
Awaiting any results from the doctor is the toughest part. He can’t escape from obsessing over the countless possibilities of what’s wrong. It’s the anxiety of hundreds of sleepless nights concentrated into a few hours of sitting in this cold hospital room. He just wants to go home and try to pretend none of it happened, but he knows he can’t.
The wait continues. Restricted to a hospital bed, he can’t even pace around the room for a small resemblance of comfort.
The results of the CSF examination are in. The physician says they identified the presence of NMDAR antibodies and that he most likely has what’s called anti-NMDAR encephalitis. As the condition is described to him, he has an autoimmune disorder causing inflammation in his brain. He’s told that he’s lucky to have caught it as early as he has because it will help with treatment and recovery.
Now, he waits to hear the treatment options. His fears of what will happen to him still race through his mind, but at least he has an answer for what’s going on.
The doctor comes in and says they have to look for the presence of tumors although it’s less likely in males than in females. If a tumor is found, it will be removed. However, if there’s no tumor to be found and then removed, there’s a higher chance of relapse. Treatment after that involves immunotherapy, which is a combination of initial and secondary treatments. The initial treatments involve the use of steroids and intravenous immunoglobins, and the secondary treatments involve rituximab or cyclophosphamide commonly used in leukemia treatments. While not much is known about this condition compared to other conditions, patients generally seem to respond well to immunotherapy.
How will he react to the treatment? Is it better to have a tumor in this case? Will he be one of the ones for whom the treatment doesn’t work? If it works, will he relapse? Will he ever be the same? This is all he can think about.
Treatment will begin right away, but in order to know what will happen, he continues to wait.
Note: This story details the fictional account of a typical progression of symptoms leading up to the diagnosis of anti-NMDAR encephalitis, an autoimmune disorder that causes inflammation of the brain. Any described details, symptoms, procedures, and treatments surrounding the disease describe a potential case of anti-NMDAR encephalitis based on current medical knowledge and results from recent medical studies.
Titulaer, M. J., McCracken, L., Gabilondo, I., Armangué, T., Glaser, C., Iizuka, T., . . . Dalmau, J. (2013). Treatment and prognostic factors for long-term outcome in patients with anti-NMDA receptor encephalitis: an observational cohort study. The Lancet Neurology, 12(2), 157-165. doi: http://dx.doi.org/10.1016/S1474-4422(12)70310-1
Update 9/18/2015 – Edited by Paige Jarreau