Riding the Waves of MS

Riding the Waves of MS

Advancements in multiple sclerosis treatments are catching up but can’t cure or prevent the disease

In 2001, Nicolette Fendon was all set to see the world from the deck of a 50-foot wooden ketch sailboat, part of a documentary miniseries with a crew of seaworthy misfits from all corners of the globe. Reviewing the contract late one evening, a few weeks before heading to the Australian port of departure, her eyes started feeling funny. She chalked it up to fatigue and went to bed. The next morning, she couldn’t see her mother’s face through her left eye. Eventually, the eye went completely blind.

Fendon had developed optic neuritis, which inflamed her optic nerve and blocked her brain’s message to the eye to see. The blindness lasted six weeks. Her mother was adamant that Fendon not go on the adventure, but the thought never crossed Fendon’s mind. Her baggage included swimsuits, sunscreen and a secret. 

Upon arrival, one month before the boat set sail, Fendon let the crew know. Within a day, she was in a Sydney hospital having an MRI and meeting with a neurologist. The diagnosis: relapsing-remitting multiple sclerosis (MS). She was 22 years old. And she had no idea what she was in for. 

Multiple sclerosis is an autoimmune disease where the immune system attacks the central nervous system, ripping away the myelin — a fatty substance that protects nerve fibers like wire coating and keeps brain and body communication running smoothly. The attacks are unpredictable and can harm the body in a variety of ways and to various degrees of severity. Attacks leave multiple scars, which is what gives this mysterious disease its name.

Trajectory of treatment

The cause of MS is unknown, but scientists suspect genetics play a role. Some 2.3 million people in the world are affected by MS; nearly 1 million are in the U.S. Most diagnoses occur between age 20 and 50, with women two to three times more likely to develop MS than men. 

Because MS disrupts the central nervous system, the symptomscan present themselves almost anywhere on the body in any way,including numbness, fatigue, dizziness, stiffness and difficulties walking and seeing. The attacks occur without warning. In some cases, like with Fendon’s left eye, the damage is fleeting. But when attacks are more intense and/or frequent, the damage can be long and everlasting, potentially leaving patients unable to speak, walk, control their bowels or live any semblance of a healthy, independent life. 

Previously, treatment focused on trying to prevent attacks and slow the disease’s progression. But in 2004, Tysabri, a drug that suppresses the immune system and hinders it from lashing out, changed the game. 

“This was a major breakthrough,” says Dusan Stefoski, MD, director of the Rush Multiple Sclerosis Center and associate professor at Rush University Medical Center. “It showed major benefits that we hadn’t seen before. People had completely stopped getting worse relatively early in the disease. And the earlier you treat MS, the better.” 

But there’s a problem. A suppressed immune system is an invitation for viruses to run wild. In Tysabri’s case, it was the JC virus. Once in the brain, the JC virus causes an infection called progressive multifocal leukoencephalopathy, which can exacerbate the very disabilities the drug is trying to prevent and even cause premature death.

Healing multiple scars

Experts are looking at how to stop the immune system from attacking the nervous system and how to repair nerves damaged from MS. But there are no clear answers yet. 

“We don’t know how to completely stop the immune system from attacking, but we can slow it down,” Stefoski says. “Repair treatments are being studied now, but none are on the market. International trials have been able to show some repair of myelin, and such treatments may be available in two years or so. But we can’t permanently cure or prevent new cases.” 

Stefoski and Floyd Davis, MD, (now retired) led the development of the tablet drug Ampyra at Rush. “It’s the only medication that can improve the damaged nerve function” allowing patients to walk with greater control, Stefoski says. “It doesn’t put it back to normal, but it can make improvements.” 

At the University of Illinois NeuroRepository, a team is collecting and reviewing immune cells. The discoveries they’ve made have offered clarity into MS and other neurological and autoimmune disorders, says Michael Carrithers, MD, PhD, section head of neuroimmunology in the department of neurology and associate professor of neurology at the University of Illinois College of Medicine.

“We’ve found some variance of genes that cause the patient to have more severe tissue damage,” Carrithers says. “The more damage and inflammation, the more long-term disability.”

Stopping inflammation is exactly what Richard Burt, MD, chief of immunotherapy and autoimmune diseases in the department of medicine at Northwestern Medicine, has been doing for 30 years with a treatment called hematopoietic stem cell transplantation (HSCT). HSCT doesn’t suppress the immune system — it shuts it down.

Multiple Sclerosis infographic With HSCT, a patient’s hematopoietic (blood cell-producing) stem cells are collected and stored. The patient is then given an immunosuppressant drug to deplete the immune system. Once the old system is out of the way, the stored stem cells are reintroduced. The stem cells migrate to the bone marrow and produce new white blood cells, which reboot an improved immune system.

“[HSCT] was met with skepticism from academic neurologists,” Burt says. “You have to prove your point, and that’s okay. It’s been a tough hurdle to get over, but it’s becoming more and more accepted. Now many universities worldwide are starting this treatment.”

Charting the future

 Today, Fendon is an artist and singer who is studying to be a psychologist. Her most recent MS episode came in August 2018. “It started with my toes going numb,” she says. “It came all the way up my body to my sternum and around my back. I had no energy. I couldn’t make it up a single flight of stairs without being completely wiped. A lot of those symptoms don’t go away. I can’t really feel my toes. I work out; I run; I’m incredibly physically active. I just can’t feel my toes or my feet.” 

But Fendon didn’t let MS slow her down 18 years ago, and she won’t let it hold her back now. She and her partner Daniel are trying to get pregnant. She has school to finish, songs to write. As long as her body will allow it, she’ll move on from subsequent attacks. But multiple sclerosis? Unfortunately, it’s not going away any time soon.

Above photo: Nicolette Fendon. Courtesy of Jennifer May

Originally published in the Fall 2019/Winter 2020 issue.