By David Singleton
The Times-Tribune, Scranton, Pa.
WWR Article Summary (tl;dr) Emily Gavigan’s battle against anti-NMDA receptor encephalitis will be featured on HLN’s medical mystery series, “Something’s Killing Me.” The autoimmune disorder causes the immune system to attack the brain. The mysterious illness mainly strikes young women.
The Times-Tribune, Scranton, Pa.
Emily Gavigan can pinpoint the moment she thought she lost her mind.
It came one day in January 2009, as the Laflin native, then a 19-year-old sophomore at the University of Scranton, drove home after coffee with friends.
“It was almost like somebody pressed a button. I was all of a sudden very manic and paranoid, and I thought trucks were following me,” she said.
It would get worse, much worse.
There were the stays in the psychiatric wards, the powerful medications and the ever-worsening symptoms that would leave her, a little over a year later, teetering between life and death from a mysterious ailment none of her doctors had ever seen before.
On Sunday at 9 p.m., HLN will revisit Gavigan’s story as part of its medical mystery series, “Something’s Killing Me.” The episode, titled “Into Madness,” features Gavigan and Dr. Mitchell Gross, the neurologist who treated her at Geisinger Wyoming Valley Medical Center.
Gavigan, now 28 and living in Mount Pocono, sees the show as an opportunity to further raise the profile of anti-NMDA receptor encephalitis, the autoimmune disorder with which she was finally correctly diagnosed in 2010. The disease, which causes the immune system to attack the brain, strikes mainly young women.
“I think there are a lot of people who are sick and undiagnosed with this, so there is real value in the awareness we are creating,” she said.
Most of all, she said, it’s about saving others from what she went through.
The day Gavigan experienced her first manic episode in January 2009, her mother, Grace, called a psychiatrist who treated her for anxiety in high school and set up an appointment.
“I went to see her the next day, and I thought her office was bugged completely,” Gavigan said. “I shut down and wouldn’t talk to her and ended up in the emergency room.”
Over the months that followed, Gavigan was in and out of a number of psychiatric facilities and programs as doctors tried to find the right combination of medications to treat her, eventually settling what she described as “all these heavy mood-stabilizers and anti-psychotics.”
“I was very weighed-down and zombie-like, but my brain had kind of stabilized, and I was no longer having those paranoid thoughts,” said Gavigan, who was well enough to re-enroll full-time at the University of Scranton in the fall of 2009.
In January 2010, a New York Post reporter, Susannah Cahalan, wrote about her experience with anti-NMDA receptor encephalitis and went on the “Today” show to talk about her illness. A relative saw the interview and, recognizing Cahalan’s and Gavigan’s symptoms were similar, contacted Gavigan’s father, William.
The family showed the information to the psychiatrist who was treating Gavigan at the time.
“He said, ‘Absolutely not. She has not had any seizures. This is not your daughter.’ He refused to test me for it,” she said.
Three months later, in March 2010, Gavigan was home for spring break when she suddenly lost use of her hands and started slurring her speech.
The following day, after the right side of her face started to droop, her family physician admitted her to Community Medical Center. Gavigan said she was examined by a neurologist who, after reviewing her symptoms, diagnosed her with multiple sclerosis. She was hospitalized for three days and then sent home, where she was treated with intravenous steroids.
Gavigan said she was told she would be able to return to school when spring break ended, but that never happened.
After she lost use of her arms and could not walk, her mother took her to the emergency room at Geisinger Wyoming Valley. Her father met them there.
Gross examined her and her medical records and quickly reached a conclusion that Gavigan said most likely saved her life.
“He says, ‘I don’t know what this is, but it’s not MS and it’s been going on for a year,'” she said. “He knew it was autoimmune and they started treatment for autoimmune disorder.”
Within 12 hours of her arrival at Geisinger Wyoming Valley, Gavigan developed a blood clot on her brain and suffered a grand mal seizure that lasted more than an hour.
At that point, Gavigan’s father remembered the article Cahalan wrote and showed to it to Gross, who agreed Gavigan might be suffering from the same disorder and arranged to transfer her to the University of Pennsylvania Hospital in Philadelphia.
Geisinger spokeswoman Wendy Wilson said there is a lesson there for physicians.
“One of the reasons that we wanted to do this is to remind our doctors that we all need to listen to our patients’ intuition and what they suspect and that was the case with this family,” she said.
At Penn, Gavigan was treated by Dr. Josep Dalmau, the neurologist who discovered anti-NMDA receptor encephalitis in 2007.
Before he could make a positive diagnosis, however, her condition had to be stabilized. She spent the first five days on a ventilator in critical condition. After five weeks, her condition improved to the point that doctors could perform the spinal fluid test that confirmed the diagnosis.
“A lot of it I don’t remember, so I’m fortunate in that,” Gavigan said. “I feel my parents suffered more than I did.”
The diagnosis cleared the way for three rounds of specialized immunotherapy.
In all, she spent 2 1/2 months in Philadelphia, part of that in intensive physical and speech therapy that she continued when she returned home.
“I had to relearn how to feed myself, how to write,” Gavigan said. “At one point, my dad handed me a toothbrush and I had no idea what to do with it. It was basically everything from walking on up.”
Gavigan returned to the University of Scranton in the spring of 2011, and graduated in December 2012. She earned her master’s from Rosemont College in Bryn Mawr in 2015. She works as a technical writer at Sanofi Pasteur in Swiftwater.
She has been symptom-free for five years.
Gavigan said she would not be here now if Cahalan had not gone on the “Today” show in 2010, and told her story. In 2012, Cahalan came back to “Today” and appeared with Gavigan.
“When Susannah and I went on the ‘Today’ show, there was a little girl in Nebraska who was admitted to the hospital that day and she was diagnosed because we were on,” Gavigan said. “The doctors in Nebraska really had never heard of this disease. It just kind of shows the power of sharing your story.”