If you are a woman who lives in a northern climate, you are at higher risk for multiple sclerosis. To date, there is no cure for MS, and more questions than answers…
“From 1982 until 1997 nobody knew I had MS unless I told them,” Leslie Stanek said. Stanek, who lives in Brooklyn Park and is in her late 50s, was diagnosed with multiple sclerosis 25 years ago. The disease seemed relatively easy to manage for the first 15 years. In fact, the former RN’s diagnosis at age 35 spurred her to fill her life with robust adventure and travels. She lived her life, she said, like she was about to die.
Signs & symptoms
According to experts at NINDS and the MS Society, about half of all people with MS experience some difficulties with memory, concentration, attention, problem solving and judgment, but such symptoms are generally mild.
How prevalent is MS?
Stanek and her husband, Peter, traveled to Aruba, Australia, Brazil and many other places. She tried scuba diving, hot air ballooning, boating in a catamaran and skydiving, while Peter waited on the golf course.
When symptoms emerged about once every three years, she’d go to the hospital where, she said, she was “treated with large doses of steroids to decrease inflammation and fool my body’s immune system into thinking everything was OK, to stop the attack.”
When people have MS, an autoimmune disease, their immune system attacks the myelin sheath, the protector of nerve fibers in the brain and spinal cord. It causes inflammation, damage to the sheath and eventually the nerve fibers. The damage can slow or block nerve signals that control vision, muscle coordination, sensation and strength. The damage to Stanek’s myelin was manifested initially in the loss of sight in one eye and later a numbness from the waist down. For 15 years Stanek would bounce back following the steroid treatments.
But the disease eventually worsened and by 2001, Stanek was using a cane. She remembered waving goodbye to her colleagues on May 31, 2001, as she left her job as a night charge nurse for a Fairview adult chemical dependency program. The next day the nurses were going on strike. Stanek thought she’d be returning to work with them when the strike was over. Instead, her MS accelerated and she went from cane, to walker, to wheelchair and could not return to work.
MS can be a mild illness or it can be severe and progress to permanent disability, or it can be both, as in Stanek’s case. Treatments currently available are limited to slowing the progression and alleviating symptoms. There is no cure, as yet.
Slowing the symptoms
“We don’t know the cause so we’re aiming at the effect,” said Randall Schapiro, director of the Schapiro Center of Multiple Sclerosis, Minneapolis Clinic of Neurology, and professor of neurology at the University of Minnesota. Interferons, the newest medications approved by the FDA for MS treatment, are effective in modulating the immune system but cannot repair lost functions. Schapiro said stem cells hold some promise in the restoration of myelin-producing cells but that research is “hampered by political and religious issues that shouldn’t be involved in medical science.”
Once thought to affect only brain white matter, improved imaging technology coupled with recent pathological studies have revealed that the cerebral cortex, an area involved in cognition, is also affected by MS,” said Claudia Lucchinetti, MD, a neurologist and MS investigator at the Mayo Clinic in Rochester. Lucchinetti leads the MS Lesion Project, a collaboration of researchers from the United States, Germany and Austria, that is supported by the National MS Society to study the MS lesion, a hallmark of MS. Sometimes called plaques, lesions are patches of inflammation where myelin has been stripped from nerve fibers.
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A woman’s disease
Most autoimmune diseases, such as lupus, rheumatoid arthritis and diabetes mellitus, affect women more than men. Scientific investigators have been studying the relationship of genetics, environmental factors and the biochemistry of women’s bodies to find the cause of autoimmune diseases.
“Virtually every auto-immune disease is higher in women than in men,” Schapiro said.
Most of the 80-some auto-immune diseases occur during childbearing years, some occur most frequently after menopause, and some, like MS, improve during pregnancy but get worse after delivery, and still others get worse during pregnancy. The autoimmune diseases share one thing in common: They all involve an attack on organs the immune system was designed to protect.
Encouraged by the observation that women with multiple sclerosis improve temporarily during pregnancy, researchers at UCLA in 2002 gave estriol, a hormone present during pregnancy, to six non-pregnant women with relapsing-remitting MS and six with progressive MS. The participants underwent magnetic resonance imaging at three-month intervals and indications were that 10 of the participants developed increased protective immune responses and a decrease in the number and size of MS lesions. Despite the study’s small sample size, and not being blinded (a tool to prevent bias in research) or tested against placebos, it generates-and continues to generate-considerable attention.
Schapiro suspects the high incidence of MS in women has very little to do with hormones and says the plethora of studies showing a relationship between MS and hormones are not conclusive.
He said ongoing research into neural pathways in the brain and central nervous system should eventually yield missing information that should point to the cause and make a cure for MS possible.
Lucchinetti said researchers at the Mayo and elsewhere have made some gains in their understanding of the disease but it is still unknown how the disease is initiated, why it progresses, and why certain therapies inhibit MS. Her focus is on “heterogeneity,” meaning the researchers are studying multiple potential causes-genetic, environmental, chemical-for the disease by looking at tissue samples from many different populations. So far her team has found four types of lesions, each with their own unique immune system activity.
Help in Minnesota
Where can women with MS go for help? The MS Society has a staff of around 55 and “thousands of volunteers that keep the MS Society a well-oiled machine,” said Emily Wilson, a spokesperson for the organization.
The Minnesota chapter has about 8,500 Minnesotans in its database; 75 percent of them are women. “While more women have MS than men, we’ve found that women are more likely to reach out to us, sign up for programs and utilize our services,” Wilson said. The most frequently used services are the website and the Society’s Information and Referral Center staffed by four licensed social workers. In 2007, the center responded to nearly 6,000 calls about Social Security benefits, disability insurance, how to disclose MS at a workplace, dealing with specific MS symptoms and other concerns.
Along with weekend camps and themed-getaways, the Society has organized Alaskan cruises that include accommodations for people with MS and their family members, and conferences that bring together patients, caregivers, physicians and therapists. A Feb. 23 women’s conference in Plymouth will feature a neurologist, an author of seven books on MS, and Gaye Lindfors, an inspirational speaker and author.
The MS Society also advocates for people with MS at the Capitol. “For the 2008 session, we’re pushing a caregiver tax credit for people who care for a loved one with a disability,” Wilson said. “Caregivers save the government billions of dollars by keeping their loved ones at home and out of publicly funded institutions, yet often go unrecognized in legislative discussions surrounding health care costs. We’re also working on a bill to improve Minnesota’s accessible transit system.”
The Fairview Multiple Sclerosis Achievement Center in St. Paul, founded by Schapiro about 22 years ago, was “the first of its kind,” according to Wilson, who described the day program as an environment for MS patients to connect with others while working on rehabilitation and coping and cognitive skills. It’s staffed with physical, occupational and speech therapists, nurses, social workers and chaplains who focus on an individual’s physical, emotional and spiritual needs.
The MS Society has some financial assistance programs to help clients purchase needed medical equipment, assistive living aids, home and vehicle modification, home repairs and daily maintenance. The Minnesota chapter offers a mentoring program for those newly diagnosed.
Living with MS
If there’s one thing Stanek would like others to know about MS, it’s that it’s up to every woman to decide how to live with the disease. “It’s not a death sentence,” Stanek said. “You could have MS for 20 years and no one would know it.
“There are two ways to deal with the diagnosis. You can think, ‘Oh my God, my life’s over.’ Or you can look at it as a wake-up call that you’re not immortal.
“Life is fragile. Tomorrow is a gift. There’s no predictability so instead of worrying about what’s going to happen tomorrow, live for today.”
Kathlyn Stone is a St. Paul, Minn.-based freelance science and health writer.
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