Unpredictable lives

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.

Quick facts Signs & symptoms The most common symptoms, according to the American Academy of Neurology: • Vision loss • Numbness or tingling • Weakness or fatigue • Unsteady walking • Double vision • Greater sensitivity to heat • Partial or complete paralysis • Electric shock sensations when bending the neck 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? The National Institute of Neurological Disorders and Stroke (NINDS) estimates there are between 250,000 and 350,000 people in the U.S. who have been diagnosed with MS; the National Multiple Sclerosis Society and the American Academy of Neurology give a higher estimate, at 400,000. About 200 new cases are diagnosed each week. The majority of people experience their first symptoms of MS between the ages of 20 and 40. Symptoms seldom start before age 15 or after age 60. Whites are more than twice as likely as other races to develop MS. Women are affected at almost twice the rate of men but at later ages the gender ratio is more equal. MS is five times more prevalent in northern climates than in tropical regions.

Leslie’s story
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.

Resources In Minnesota: MS Society, Minnesota Chapter www.mssociety.org Minneapolis Clinic of Neurology (Golden Valley)www.minneapolisclinic.com Multiple Sclerosis Center at University of Minnesota Medical Center, Fairview www.umphysicians.com Mayo Clinic www.mayoclinic.com National resources: National MS Society www.nationalmssociety.org National Institute of Neurological Disorders and Stroke www.ninds.nih.gov The Brain Matters, the American Academy of Neurology www.thebrainmatters.org Read about it: Managing the Symptoms of MS, Randall T. Schapiro, MD (Fifth Edition), Demos Medical Publishing, 2007 Multiple Sclerosis Q&A: Reassuring Answers to Frequently Asked Questions, Beth Ann Hill, Avery Penguin Putnam, 2003 The First Year-Multiple Sclerosis: An Essential Guide for the Newly Diagnosed, Margaret Blackstone, Marlowe & Company, 2002 Living Beyond Multiple Sclerosis: A Women’s Guide, by Lily Jung, MD and Judith Lynn Nichols, Hunter House, 2000 Online: Estriol May Ease Relapsing-Remitting MS In Women, Debra Hughes, Neurology Reviews, November 2002 www.neurologyreviews.com/nov02/nr_nov02_estriol.html

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.

The 4 patterns of MS Contrary to popular belief, there is only one MS rather than four distinct versions. People experience different patterns of the disease. “Under the microscope it all looks the same, it looks like multiple sclerosis,” Randall Schapiro said. Some people will experience only one phase, others may progress into different patterns, and many go in and out of periods of relapse or recovery. Relapsing-remitting is the most common phase and the phase where most people are first diagnosed. Fifty-five percent of people with MS fall into this category. It is characterized by periods of acute attacks or exacerbations followed by full recovery or with partial recovery and a lasting disability. Between attacks there is no progression of the disease. Relapsing-remitting MS may advance to a secondary progressive phase, which becomes steadily progressive over time with continued worsening between acute attacks. About 30 percent of people with MS experience this course of the disease. Primary progressive is a steady worsening of nerve damage from the beginning of the disease with only occasional plateaus or minor recovery, and is experienced by about 10 percent of the population with MS. About 5 percent of those with MS will start out in a progressive-relapsing phase. It is the rarest course of MS, because it is steadily progressive from the onset but also has clear acute attacks. Schapiro cautioned that the different courses of MS should not be used as a diagnosis but rather as a description of how a person is doing in a certain period of time. Being labeled as belonging to a certain category could affect insurance coverage, especially when the FDA has approved certain drugs for one course of the disease but not another. The unpredictability of MS means that patients move from category to category. Diagnosing MS is sometimes a long process of tracking symptoms and ruling out other neurological disorders that have similar traits. And symptoms may appear for days or months and come and go with no discernable pattern. Neurologists who diagnose MS use imaging tests, such as magnetic resonance imaging (MRI), that can sometimes, but not always, detect central nervous system lesions resulting from the loss of myelin. Magnetic resonance spectroscopy (MRS) can measure the presence of N-acetyl aspartate, a chemical in the brain. Reduced N-acetyl aspartate levels can be an indication of nerve damage.