During spring of last year, Jack Osbourne began experiencing puzzling symptoms. On location in Utah to film Haunted Highway, his television series about the paranormal, the 27-year-old television star (and son of legendary rocker Ozzy and media personality Sharon) was shooting a scene that required him to scuba dive into a cold lake at night. He emerged from the water with a migraine-like headache. The next day, he awoke to find his eyesight blurry.
As his vision became progressively worse, Osbourne made an appointment with his doctor, who referred him to a neurologist at Cedars-Sinai Medical Center in Los Angeles. After extensive testing—including magnetic resonance imaging (MRI) and lumbar puncture (spinal tap)—Osbourne was diagnosed with relapsing-remitting multiple sclerosis (MS)—the most common form of the degenerative, neurologic condition. (See box, “Multiple Sclerosis: The Basics.”)
Multiple Sclerosis: The Basics
Multiple sclerosis (MS) is a chronic disease that affects the central nervous system, which is made up of the brain and spinal cord. MS damages the material that surrounds and protects nerve fibers, called the myelin sheath. This damage slows down or blocks messages between the brain and the body.
What are the four types of MS? Relapsing-remitting MS is the most common. It is characterized by periods of relapse (symptom flare-up) followed by periods of remission (recovery). More than 80 percent of people who have MS begin with relapsing-remitting cycles. Many patients with relapsing remitting MS go on to develop secondary-progressive MS. This type involves relapses and partial recoveries, but the disability doesn't fade away between cycles; instead, it worsens until a steady progression of disability replaces the cycles of attacks. Primary-progressive MS progresses slowly and steadily from its onset. There are no periods of remission and symptoms generally do not decrease in intensity. Progressive-relapsing MS is a relatively rare type of MS in which people experience both steadily worsening symptoms and attacks during periods of remission.
What are the symptoms of MS? Symptoms can include tingling, numbness, loss of balance, blurred or double vision, and weakness in one or more limbs. As the disease progresses, symptoms may include muscle stiffness, pain, incontinence, and cognitive problems such as trouble finding words and loss of short-term memory.
How is MS diagnosed? In order to make a diagnosis of MS, a physician must:
- ▸ find evidence of damage in at least two separate areas of the central nervous system AND
- ▸ find evidence that the damage occurred at least one month apart AND
- ▸ rule out all other possible diagnoses
The diagnostic tests most commonly used to determine if someone has MS include magnetic resonance imaging (MRI) of the brain and spinal cord, lumbar puncture (spinal tap), and tests to determine whether nerve pathways have been affected.
How is MS treated? Ten drugs are approved by the U.S. Food and Drug Administration to slow disease progression: beta-interferons (Avonex, Betaseron, Extavia, and Rebif); glatiramer acetate (Copaxone); natalizumab (Tysabri); mitoxantrone (Novantrone); and the oral drugs fingolimod (Gilenya), teriflunomide (Aubagio), and dimethyl fumarate (Tecfidera). In addition, short courses of steroids are used for symptom flare-ups. All of the treatments can have significant side effects.
What research is being conducted? The National Institute of Neurological Disorders and Stroke ( ninds.nih.gov) conducts and supports research. More than a dozen clinical trials in humans are underway.
For more Neurology Now articles on MS, go to http://bit.ly/x4E6Fb
The news came as a shock to Osbourne, who was introduced to audiences in The Osbournes. This hugely popular MTV reality series ran from 2002 to 2005 and featured the domestic life of his family. Engaged last year to his longtime girlfriend, Lisa Stelly, Osbourne had been anticipating one of the happiest years of his life. Two weeks prior to his diagnosis, he and Lisa had celebrated the birth of their daughter, Pearl, and were busy planning their wedding. Suddenly, Osbourne faced an uncertain future.
“When I was diagnosed, I immediately thought of comedian Richard Pryor, who had MS,” Osbourne says. “I envisioned being in a wheelchair a couple of years down the road and thought that was it—game over.”
It's not uncommon for people who are diagnosed with MS to initially fear the worst, says neurologist Barbara Giesser, M.D., Fellow of the American Academy of Neurology (AAN) and professor of clinical neurology and clinical director of the Multiple Sclerosis Program at the University of California, Los Angeles.
During the past 20 years, however, the disease has become highly treatable. While researchers still have not found a cure, many medications can help reduce symptoms and sometimes even slow the progression of the disease. Advances in treatment options, including oral medications—as well as a new understanding about the genetics of the disease—have given both doctors and patients more reason to be hopeful.
“While MS is a complex neurologic condition that requires ongoing care, many people can live a full life with appropriate treatment,” Dr. Giesser emphasizes.
Until recently, only injectable drugs had been available to treat MS. In September 2010, the first oral medication for MS, fingolimod (brand name Gilenya) was introduced, followed by the launch two years later of teriflunomide (Aubagio), a once-daily oral medication for patients with relapsing forms of MS. This past March, the U.S. Food and Drug Administration (FDA) approved another oral medication, dimethyl fumarate (Tecfidera).
In addition, researchers are working to pinpoint genetic markers that will help determine which medications will be most effective in particular patients. This would allow doctors to customize treatments for individuals, opening the door to genetically personalized medicine.
A CRASH COURSE IN MS
Before his diagnosis, Osbourne admits MS wasn't on his radar. After learning he had the disease, which affects more than 2.1 million people worldwide, Osbourne wanted to learn everything he could about how the disease is managed.
“I didn't want to rush into any treatment decisions until I'd done some research and talked with my neurologist,” Osbourne says. “Also, I realized in retrospect that I had been having symptoms for quite some time. In 2010, I experienced numbness in my legs for about two months and just assumed it was a pinched nerve.”
Neurologist Bruce Cohen, M.D., Fellow of the AAN, professor of neurology and director of the MS Clinic at the Feinberg School of Medicine, Northwestern University in Chicago, IL, says it may take time for MS patients to get a definitive diagnosis. “Symptoms also may come and go, often disappearing for months or years,” he says.
Dr. Cohen encourages his recently diagnosed patients to discuss the risks and benefits of various therapies before beginning a course of treatment. The goal is to suppress the disease as completely as possible early on, he says.
“We look for a treatment that is effective for each individual patient and presents an acceptable level of risk to that patient in terms of potential side effects such as fatigue, flu-like symptoms, infections, injection-site reactions, and gastrointestinal problems,” Dr. Cohen says. “This can be different for different people. And some patients may have other medical conditions—such as depression, diabetes, or heart disease—that affect how well they can tolerate treatment.”
Dr. Cohen says patients should talk to their neurologist about their lifestyle, family, and employment to consider how the disease may impact their life.
“Newly diagnosed patients may be concerned that they will have to change major life plans or activities, but often this is not the case,” Dr. Cohen says.
Six weeks after his diagnosis, after reading about the disease and exploring his treatment options, Osbourne decided to start nightly glatiramer acetate (Copaxone) injections. Used to treat cases of remitting-relapsing MS, the drug has been shown to reduce the number of relapses and to slow the progression of the disease.
“Since starting medication, my vision slowly returned, and I haven't experienced any side effects,” says Osbourne, who had lost 80 percent of the vision in his right eye.
Being diagnosed at 26 posed a unique set of challenges for Osbourne. Although MS is typically diagnosed in people ages 20 to 40—with twice as many women as men—the English media personality didn't know anyone his own age who had MS.
“I've learned there are so many misconceptions about MS,” Osbourne says. “It's not a disease that only affects older people or women.”
Shortly after discovering he had MS, mutual friends introduced Osbourne to talk show host Montel Williams, who was diagnosed with MS in 1999 at the age of 42. At the time, Williams' prognosis was bleak. Doctors told him he would be using a wheelchair within four years, which turned out not to be the case.
“Montel has provided me with a wealth of information,” Osbourne says. “He's talked to me about how he adjusted his diet and stays healthy by exercising.”
Osbourne also found support through Nancy Davis, a Los Angeles-based jewelry designer and founder of the Nancy Davis Foundation, who was diagnosed with MS in 1991 at the age of 34. In April, Davis honored Osbourne and his mother, Sharon, at her Race to Erase MS benefit in Los Angeles. Davis presented the two with her organization's Medal of Hope award, given annually to those who promote awareness of MS.
Mentors can help newly diagnosed patients learn to manage a chronic condition such as MS. But finding a good mentor or a support group requires diligence and judgment.
“There's value in finding someone with similar health challenges that you can connect with, but you want to select your mentors or support group carefully,” Dr. Cohen says. “You want to find a person or group who has a situation or an outlook that is similar to your own, but you also need to find someone you can trust. If you talk to the wrong person and get erroneous information, it can make your condition seem more frightening and possibly lead you away from effective disease management.”
This is especially true for MS patients, since symptoms can vary dramatically from one individual to the next, and even in the same individual from one period of time to another.
“The National MS Society has a great program where they match individuals with peer counselors,” Dr. Cohen says. “They pair people with others who are at the same stage in their disease and help them navigate issues such as family stress or concerns about their diagnosis.”
Support can also benefit family members who have a loved one that has been diagnosed with MS. “Jack's diagnosis was a complete shock to us,” Sharon says. “Ozzy and I started reading everything we could about MS. I did the same thing after I was diagnosed with colon cancer. I think it's empowering to know what you're up against and to realize that having a serious illness isn't a death sentence.”
Sharon is proud of her son's resilience. “He's extremely strong. He's taking his health seriously, and he has a positive attitude,” she says.
While Jack Osbourne has chosen to live publicly with MS, others feel the need to hide their disease over worries that it might hurt their careers.
In August, Osbourne and his mom, Sharon, found themselves at the center of controversy after Osbourne was reportedly let go from the NBC reality series Stars Earn Stripes, featuring celebrities competing in military-style challenges. The television network denied this, saying that while Osbourne was being considered for the show, a contract had not been signed. But the incident shed light on the stigma of workplace discrimination and its effect on employees who have chronic illnesses.
The National MS Society has developed a valuable worksheet entitled Should I Tell? (Download at nationalmssociety.org.) The worksheet encourages employees to consider long-term implications and to weigh their decision carefully.
The Americans with Disabilities Act, which covers employers with 15 or more employees, prohibits on-the-job discrimination against individuals with disabilities. If you believe your rights in the workplace have been violated because of having MS, you can file charges with the Equal Employment Opportunity Commission.
For more information on your workplace rights while living with a chronic health condition, visit eeoc.gov/facts/ada18.html.
EMBRACING A HEALTHY LIFESTYLE
In the summer of 2005, Osbourne shed a whopping 70 pounds and completely overhauled his life. He got treatment for his substance abuse problems, trading in alcohol, cigarettes, and junk food for a healthy diet and regular exercise.
Today, Osbourne continues to stay active and eat healthy. He takes a multivitamin and vitamin D supplement.
“Some data show a link between low vitamin D levels early in life and subsequent increased risk of developing MS,” Dr. Giesser says. “Also, some studies show that low vitamin D levels in people who already have MS are linked to a higher risk of relapse.”
However, this research is not considered conclusive. A number of large, ongoing studies should help determine with more confidence whether vitamin D can prevent or treat MS, what blood levels of this vitamin are appropriate, how much should be consumed through diet or supplements, and how much vitamin D is safe to take. But before supplementing their diet with vitamin D, patients should talk to their doctors.
Osbourne also recently joined his parents as they embarked on a weight-loss plan. While there is no particular diet recommended for MS patients, Dr. Giesser says a healthy diet—with plenty of fruits and vegetables, lean proteins, complex carbohydrates, and polyunsaturated fats—will promote general good health and help to prevent conditions such as hypertension and diabetes that make MS more difficult to manage. Regular exercise also benefits MS patients by improving mood as well as muscle strength, flexibility, and balance.
“Not only does exercise have the same benefits for people with MS as it does for people in general, it also has been shown to lessen some MS symptoms such as fatigue and depression,” Dr. Giesser says. “Research also suggests that exercise may have some anti-inflammatory effects. This is an active area of investigation.”
Osbourne tries to exercise three to four times a week through hiking or weigh training. Patients should talk to their neurologist before starting an exercise program, embarking on a new diet, or taking vitamins and supplements, especially because some supplements can interfere with prescribed medications. Follow your neurologist's suggestions on dosage—not just of medications, but also vitamins or supplements.
Osbourne also has learned to make downtime a priority, as stress seems to exacerbate MS symptoms for many people.
“After a hectic day, I often retreat to my man cave and play Xbox for an hour,” Osbourne says with a smile. “My wife, Lisa, has also gotten very good at helping me learn to say no to professional requests. It's easy to believe that I constantly need to be on the go. Lisa encourages me to take breaks.”
Today, Osbourne—who continues to work on Haunted Highway and produce other television shows, including Alpha Dogs, the National Geographic series about an elite force of dogs that works with the police and military—says he's committed to raising awareness about MS.
“I struggled at first as to whether I should tell people I had MS, but I felt as if I almost had an obligation to go public,” Osbourne says. “MS is a part of my life, but it's not controlling my life, and I hope that bringing attention to my condition will help the global cause.”