Confronting Multiple Sclerosis
One cool December day in 1993, Erin, a shy, 20-year-old college student, and her mother drove from their Orlando, Florida, home to a nearby neurologist's office. Erin looked forward to celebrating her 21st birthday the next evening as well as Christmas, which was just around the corner. There was, however, a damper on her excitement. She'd been feeling tired and a week or so earlier, she'd noticed a spot on one eye that caused her vision to blur. A few days later, while shampooing her hair, her left hand stopped working. The problems with her eye and her hand prompted Erin to schedule an appointment with the specialist.
During the appointment, the neurologist pinned her magnetic resonance imaging (MRI) results up, reviewed the radiologist's report, and confirmed its suggested diagnosis of multiple sclerosis (MS). "Yep, you've got MS,” he curtly told the young woman, “There’s nothing you can do." The two women left his office stunned by the news and the poor way in which it had been delivered.
The next evening, a determined Erin joined friends and family for her 21st birthday party, followed by a night of bowling, a beloved pastime. She'd given friends the heads-up that she wasn't well. "But no one really understood because you can't see the disease," she recalls. "When you can't see it, people think there's nothing wrong with you. And, at that time, there wasn't a lot wrong with me."
In hindsight Erin, now 42, calls herself naive about her diagnosis at age 20. "I thought, 'Okay, I've got MS. It hasn't stopped me yet, and it's not going to stop me.' I didn't know then," she says, "what MS had in store for me."
The Lay of the Land
Individuals such as Erin diagnosed with MS struggle with challenges that include difficult decision-making about treatment options and their possible side effects. They also live in a constant state of uncertainty, often not knowing what the next day, week or months ahead hold in store. While there have been multiple medical advances in the treatment of MS since 1994, there are no therapies that stop disease progression.1 There remains a significant need for those living with the unpredictable disease, ranging from safer treatment options to better disease control. Meanwhile, the fight against the disease continues. Experts and people living with MS hope that better medicines will become available and, ultimately, a cure for the disease will be found.
MS affects the brain, spinal cord and optic nerves (nerves in the eyes), which comprise the central nervous system, or the CNS. The complex and chronic disease is caused by an immune system attack against the myelin coating around nerve cells, as well as the nerve cells themselves, in the CNS. The damage results in scarring, or lesions, in the brain that interferes with the ability of the CNS to communicate with the body. Common symptoms people with MS might experience include fatigue, and impaired ability to move or think.2 Today a diagnosis usually requires a neurological history, clinical and MRI exams, and sometimes a spinal fluid analysis.3
Often an insidious disease, MS can impact different parts of the body and cause serious disabilities. Most people have relapsing MS (RMS), and experience periods of increased symptoms (relapse) followed by periods of remission. People with this more common form of MS are usually placed on various therapies over a period of years. Many individuals with this type of MS may experience fewer relapses over time but symptoms usually progress and the person’s ability to function deteriorates. Another less common form, known as primary progressive MS (PPMS), impacts about 10-15 percent of people with the disease. In PPMS, people tend to have few or no periods of relapse and their ability to function declines steadily from the time of diagnosis.4
The Uncertain Journey
MS is an unpredictable disease, and the most difficult part can be dealing with the uncertainty every new day brings
Navigating the Unknown
Shortly after Erin was diagnosed with MS, the first medicines to treat the disease were approved and became available in early 1993.5 They helped Erin reach her goals of finishing college and starting a teaching career. Over the years, she has had multiple relapses—some affecting the way she thinks while others affecting her physical ability. “What I didn’t realize would happen is that every single relapse is different,” she says.
Over the years, Erin keeps learning how to live with the unpredictability of MS. She shares her knowledge and experiences as a volunteer with MS support associations, both online, such as the “We’re Not Drunk, We Have MS” Facebook group, and a local Orlando organization, “A Natural Tough Self-Starter,” or ANTS. A common thread in group discussions, according to Erin, is navigating the unknown.
The thing about uncertainty that's very hard and that scares me the most is not knowing each day when you wake up how you're going to feel.
"The thing about uncertainty that's very hard and that scares me the most," she says, "is not knowing each day when you wake up how you're going to feel." Nonetheless, Erin maintains a positive and can-do outlook on life. In 2006, she had to retire from teaching full-time and worked as a substitute teacher and educational interpreter before retiring permanently in 2010. Since then, she continues to find new activities and interests when she's no longer able to keep up with old ones. When Erin stopped bowling in 2011 because of balance problems, she took up mall walking with a friend and a walker.
Her biggest wins? "I still have a decent life. I'm breathing. I'm alive. I'm talking to people. I'm smiling. I'm passing on joy, hopefully. Yes, I can get up today and walk. And, on the days I can't, guess what? I have movies on my computer I can watch. I have things I can do to entertain myself. So I can learn something that day."
Robert Rapp, chief operating officer of the Multiple Sclerosis Association of America, understands the uncertainty that Erin and others living with MS and their caregivers face daily. "It's always this notion of being on edge and being unsure and the anxiety that's associated with that," says Rapp. The education and services his group and similar organizations provide offer patients the opportunity to become their own advocate. “MSAA believes that giving people with MS the tools, resources and information is essential in managing one’s health, and a key factor in achieving an improved quality of life,” he says.
Physicians also play a large role in trying to help people with MS navigate the unknown. The top question a newly diagnosed patient will ask neurologist and MS specialist Clyde Markowitz is if they're going to be in a wheelchair. His answer depends on symptoms the patient has, and how many areas of MS-related brain injury he sees on their imaging results. "At the end of the day, I'm very positive for them about their current world and what things might look like in five, or ten, or twenty years," says the associate professor and director of the multiple sclerosis program at the Perelman School of Medicine, University of Pennsylvania.
Markowitz recalls as a young resident at Columbia University in the early 1990s treating an equally young population of patients. "It was frustrating...I mean to the point where I felt horrible that these young, healthy people were being diagnosed with MS and I had nothing to offer them that could alter the course of their disease," he says.
When MS expert and neurologist Anthony Reder was a medical resident in Minneapolis in 1982, he remembers there were at least three patients with MS in his hospital at all times. CT scans were just starting to be used but, according to Reder, they were poor tests for the disease. "We're talking about a different world, where you had to base your clinical decisions only on an examination and history," says the professor of neurology at the University of Chicago.
Fast forward three decades. Today, there might be one MS patient hospitalized every two weeks at the University of Chicago Medical Center, Reder says. Recently he was exercising in a gym, surrounded by super-fit people. "I'm killing myself, ready to die, wondering when the heart attack is going to happen, and this woman walks up to me and says, 'Dr. Reder.' I look at her and say, 'Oh, my gosh.' And she says, 'I'm your patient.' It's an MS patient who is running circles around me. That's not the picture I could have ever imagined when I was a resident."
This is MS in 2015. There are people who do really well. And I've seen that more and more often in my patients—that they're working, they’re well informed, they have minimal attacks.
"This is MS in 2015," he continues. "There are people who do really well. And I've seen that more and more often in my patients—that they're working, they’re well informed, they have minimal attacks. The main thing I try to do is prevent my patients from making bad health choices, like smoking, and being overweight." He also counsels them to take Vitamin D at a prescribed dosage because levels of this vitamin are usually low in people with MS and it appears to prevent some disease activity.
Miles to Go
While available treatments for RMS can reduce the frequency of relapses, and slow progression of the disease, they may also cause severe side effects and safety concerns. It's a delicate balance between efficacy and risk. Erin may soon find herself weighing those options as she figures out next steps in managing her MS. "I've tried pretty much most of the drugs and I'm getting ready to switch again," she says. "The only other drugs I have options for are the very dangerous ones."
At the research end, scientists are seeking effective new medicines for people with MS that better balance efficacy and safety. "There's still a real need for medicines that deliver high efficacy and have an impact on disease activity with a better safety profile." says Paulo Fontoura, MD, PhD, Global Head Clinical Development, Neuroscience, Roche.
Finding medicines that can reverse, or improve the function of people diagnosed with MS is critical, according to Markowitz. "It's a big stumbling block for us to get to because it takes a long time to see a benefit in these patients because they are progressing slowly. So you need to get organizations and companies who want to fund long studies like that," says Markowitz.
Physicians and patients say more effective medicines are needed to manage symptoms, especially fatigue, without difficult side effects like insomnia, nausea and anxiety. What's more, researchers hope for new therapies that could reverse damage in the brain and prevent progression of the disease. "We're searching for something to increase myelin repair so that it might help MS," says Reder. "But what we're doing best now is stopping attacks, and the question is how to enhance that with better drugs and lifestyle changes.”
Meanwhile, a cure is on everyone's wish list. "We're all looking for it and for something that reverses the progression of the illness," says the MSAA's Rapp, "and hopefully those drugs are closer to market."
Erin: A Day in the Life
The Road Ahead
In 2013, Erin celebrated the 20th anniversary of her diagnosis with family and friends. No longer the bashful college sophomore she remembers from her 21st birthday party two decades earlier, she has found her voice as an advocate for herself, and others living with MS.
For the party's theme she drew inspiration from the 1976 Sylvester Stallone film "Rocky," the saga of an underdog southpaw who, in the ring, goes the distance. For the occasion Erin donned boxing gloves, shorts, and a bright white T-shirt. On the front of the shirt she'd drawn in red ink the letters "MS," enclosed in a circle with a slash through it. And on its back she'd written in red: "20 YEARS WITH MS AND STILL KICKING IT."
"My hope, and the reason I get up every morning, is that I can help somebody else," says Erin. "Who knows if my story or my struggles may be something that someone else is going through? Maybe they can look at me and say, 'Wow,' and they can maybe see, 'Hey, there is still life after MS.'' There is. I'm still here...twenty-one and a half years later."
My hope, and the reason I get up every morning, is that I can help somebody else. Who knows if my story or my struggles may be something that someone else is going through?
The gloves may have come off two years ago but Erin is still in the ring. She plans to keep going the distance. "Do I think there will be a cure? Possibly. But if not," she says, "let's continue to research. Let's not stop the fight."
1Mayo Clinic. Multiple Sclerosis Treatments and Drugs. Last revised July 10, 2014. Retrieved September 9, 2015 from http://www.mayoclinic.org/diseases-conditions/multiple-sclerosis/basics/treatment/con-20026689
2Multiple Sclerosis International Federation. What is MS? Last revised April 24, 2015. Retrieved September 9, 2015 from http://www.msif.org/about-ms/what-is-ms/
3National Multiple Sclerosis Society. Diagnosing Tools. Retrieved September 9, 2015 from http://www.nationalmssociety.org/Symptoms-Diagnosis/Diagnosing-Tools
4Multiple Sclerosis International Federation. Types of MS. Last revised April 22, 2015. Retrieved September 9, 2015 from http://www.msif.org/about-ms/types-of-ms/
5Bermel RA, Rudick RA. Interferon-beta treatment for multiple sclerosis. Neurotherapeutics 2007; 4:633-646.