Living with the unpredictable: Women and MS

MRI depicting MS lesions. Image courtesy of Gemma Holmes

Multiple sclerois has many forms. It can be a mild illness or it can be severe and progress to permanent disability. It's much more prevalent in women than in men, and in northern climates. There is no cure, as yet. Available treatments can slow the progression and alleviate symptoms. This article explores one woman's journey with MS, offers insight on current treatments and research from two neurologists, and describes some places to go for help.

Image: MRI depicting MS lesions provided by Gemma Holmes, a 27-year-old artist and jewelry maker in Adelaide, Australia. Holmes was diagnosed with multiple sclerosis July 2007.

“From 1982 until 1997 nobody knew I had MS unless I told them,” Leslie Stanek said. Stanek, 55, of Brooklyn Park, was diagnosed with MS 20 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 like she was about to die.

She traveled to Aruba, Australia, Brazil, and many other places. She tried scuba diving, hot air ballooning, boating in a catamaran and sky diving.  Her husband Peter, an accountant, joined her on the trips, and waited on the golf course until her return to land.

But the disease exacerbated and by 2001, Stanek was using a cane. She remembers 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.

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.

“We don’t know the cause so we’re aiming at the effect,” said Randall Shapiro, director of the Shapiro Center for 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. Shapiro 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 has revealed that gray matter, the area of the brain associated with cognition, has atrophied in some MS patients, 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.

Why do women get MS more than men?

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 auto-immune diseases.“Virtually every auto-immune disease is higher in women than in men,” said Shapiro.

Most of the 80-some auto-immune diseases occur during child-bearing 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 auto-immune 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 generated -- and continues to generate -- considerable attention. 

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.

The four patterns of MS