In August 2019, Karli Larsen, of Wauwatosa, was experiencing the stress and satisfaction a new home brings when her summer came to a crashing halt.
In addition to unpacking and settling in, looking after her two young children, and holding down a job at a cultural nonprofit, Karli kept her calendar booked with the everyday things that make us all wish there were more hours in a day. Like going to the dentist.
“About a week after my appointment, I noticed a numb spot in my mouth along the gum,” Karli said. “I’d been reprimanded for not using my bite guard at night, so I put it back in. That didn’t seem to help.” The numbness lessened for a time, but a few weeks later it returned — along with a severe case of vertigo.
“I couldn’t walk a straight line and it was scary going down stairs,” she said. Karli was also feeling unusually fatigued. One weekend, while her husband, Eric, was away with their son at Boy Scout camp, she felt especially out of sorts.
“I didn’t want to freak out my husband, so I called my mom, who works in health care administration in upstate New York,” Karli said. “She said, ‘You need to go to the hospital right now.’”
Following her mother’s advice, Karli asked her aunt to give her a lift to Froedtert Hospital, where she was seen immediately in the Emergency Department.
“The Neurology team administered a neurological test, making me stand on one foot and all that,” Karli said. “The doctor said, ‘We have to level with you: We think you have MS.’ That was the shock of my life."
Beyond Usual MS Treatments
Multiple sclerosis (MS) is a relapsing and progressive neurological disorder that affects the central nervous system, including the brain, spinal cord and optic nerves. It is usually diagnosed between the ages of 20 and 50, with women developing the disease at twice the rate of men. Karli was 41 when her severe symptoms appeared.
After an MRI raised suspicion for a diagnosis of MS, she was admitted to Froedtert Hospital and started on intravenous steroids to reduce the inflammation in her brain and spinal cord. But her symptoms advanced dramatically. She wasn’t walking any better and began to have trouble swallowing. Karli was put on a plasmapheresis program, in which a patient’s plasma is exchanged with that of a donor in order to eliminate proteins that are attacking the body. Still, her condition worsened. She developed paralysis of muscles in her face and the muscles that move the eyes. Ultimately, Karli became quadriplegic and was placed on a ventilator.
“Typically, MS comes as an attack and worsens within a few days to weeks, and then people start to recover somewhat,” said Ahmed Obeidat, MD, PhD, neurologist and MCW faculty member. “Her course was very different, to the point where we began to wonder if our diagnosis was wrong. We wondered if this could be a lymphoma of the nervous system or some sort of other aggressive process.”
Dr. Obeidat and the team decided to do a brain biopsy, which confirmed the MS diagnosis. As the steroids and plasmapheresis had not helped, he then stepped beyond the usual treatment options and suggested a high-dose infusion of cyclophosphamide, a chemotherapy medication used to suppress the immune system. The drug is rarely used in treating MS, and then only in extreme cases, such as Karli’s.
“We needed something to basically hit her immune system very hard because it was attacking her brain, brain stem and spinal cord,” Dr. Obeidat said.
Extraordinary Care for Multiple Sclerosis
Slowly, Karli began to show signs of recovery. The first was when she was able to move a finger.
“I was in the room that day and I was ecstatic because this was a real glimpse of hope,” Dr. Obeidat said. “Slowly, she began to regain movement. She came off the ventilator and was able to get out of bed. Her degree of recovery was miraculous. And the credit goes to Karli, her family, the Neuroscience ICU team, the rehabilitation team and everyone involved in her care.”
There were no shortcuts in Karli’s road back. She spent almost four months in the hospital and weeks in physical and occupational therapy. She went home in a wheelchair, graduated to a walker, and then to a cane.
“I’ve got a picture of my family and me on the Seven Bridges Trail in Grant Park,” Karli said. “Who does Seven Bridges with a cane? Apparently I do.”
By April 2020, she could walk without a cane. Today, she is enjoying an unexpected degree of normalcy. “I will need to be on meds forever and I’ve lost hearing in one ear,” she said. “My voice has gotten gravelly and I have to be careful of my balance. But I’m not in pain and my energy level is generally pretty good. This was a long ordeal, but because I was treated quickly — and I have to thank Dr. Obeidat for not wasting any time and moving on to another treatment when others didn’t work — I’ve been able to recover a lot of functionality. I can’t complain.”
Comprehensive, Multidisciplinary Care for Multiple Sclerosis
Froedtert & MCW MS experts are recognized regionally and nationally for their leadership in MS research and clinical trials and for their aggressive approach to treatment. To learn more, visit froedtert.com/multiple-sclerosis.