MULTIPLE SCLEROSIS,
THE MYSTERY
DISEASE
Colorado has one of the
nation’s
highest rates of MS
By COURTNEY DRAKE-MCDONOUGH
One day Susan Schutz woke up numb on her left side. Her vision was blurred; she was exhausted and could tell her mind just wasn’t quite right. She was 24 years old and baffled about what was happening to her.
A variety of tests to eliminate other possibilities finally led to a diagnosis that shocked her — multiple sclerosis. With that, Susan became part of the Colorado mystery. Our state has one of the highest rates of MS in the nation — one in 580 people is diagnosed with the disease compared to one in 2,000 in the southern states. The disease strikes more than twice as many women as men nationwide, most often affecting people between the ages of 20 and 50.
THE FACTS ON MS
According to the National MS Society, 2.5 million people worldwide have MS. In America, 400,000 people are afflicted, with 200 being diagnosed weekly. That means that every hour someone is diagnosed with MS, a disease for which there is no cure. Because doctors in the United States are not required to report MS cases, the numbers are largely based on self-reporting to local chapters of the National MS Society.
“Today, the Colorado chapter serves nearly 9,000 people with MS and 68,000 friends and family that are directly affected by the disease,” says Margie Abernethy, marketing manager with the National MS Society. Multiple sclerosis affects the central nervous system, which includes the brain, spinal cord, optic nerves and surrounding fatty tissue. This tissue, called myelin, protects the nerve fibers and helps them conduct electrical impulses. When a person has MS, he or she loses myelin in multiple areas. The resulting scar tissue is called sclerosis.
Sometimes the nerve fiber itself is damaged or broken. When myelin is destroyed or damaged, the nerves can't conduct electrical impulses to and from the brain. This breakdown is what produces the symptoms of MS.
Symptoms can manifest themselves in a variety of ways and can appear and disappear. For some people, symptoms seem virtually nonexistent, while they can be debilitating for others. MS can cause blurred vision, loss of balance, poor coordination, slurred speech, tremors, numbness, extreme fatigue, problems with memory and concentration, paralysis, blindness, sexual dysfunction and more.
MS is not contagious and is not directly inherited like some other diseases. Some genetic factors do make people more susceptible to contracting the disease, however. MS occurs more commonly in people of northern European descent, while the incidences are much lower for people of African, Asian and Hispanic ancestry. A recent study through the Mayo Clinic indicates women get MS at a higher rate than men because of a genetic variation more often present in women than men. While MS is not considered to be fatal, people can die from other illnesses because their autoimmune system is compromised.
THE COLORADO MYSTERY
“Nobody knows for sure why Colorado a high rate of MS,” says George Garmany, M.D., of Associated Neurologists in Boulder. “We do know that rates of MS rise the farther one lives from the equator, in either direction. For instance, people in Minnesota would have a higher rate than Colorado,” explains Dr. Garmany. “Studies have found that a person’s risk for MS is established depending on how far from the equator they lived between the ages of 5 and 15. Regardless of where they moved to after that, the risk gained in childhood was retained.”
Related to that theory is the immigration of northern Europeans to the Unites States. The disease is said to have started in northern Europe, so when people from that area came to America, they settled in the northern tier of states because they were reminded of home. Since MS combines genetic and environmental factors, the presence of these immigrants in America helped increase the rates of MS.
A new theory relates to the link between the lack of vitamin D in the system and the development of MS. The farther we are from the equator, the less sun we receive and therefore, the less vitamin D.
DIAGNOSIS AND TREATMENT
Diagnosing MS can be difficult. Some of the symptoms can be attributed to other causes. So often, it’s the process of eliminating other possibilities that leads to a final diagnosis. There is no single laboratory test available to either prove or rule out MS. However, magnetic resonance imaging (MRI) is often used to make a definitive diagnosis because it shows lesions on the brain caused by MS.
Although there is no cure for MS, combinations of medications and physical therapy are used with four goals in mind: to reduce future disease activity, treat exacerbations, manage symptoms and improve function and safety. The strategy is to address each of these goals in combination to help enhance the quality of life for people with MS.
After Susan Schutz was officially diagnosed with MS, she began steroid treatments that helped until her symptoms worsened. At one point, she suffered from lack of balance, extreme vertigo and exhaustion. Her vision and hearing were affected, as were her cognitive abilities. She couldn’t even remember how to spell her name. Schutz reduced stress in her life and began a variety of injection treatments. She has been in remission for nine years with only a few minor flare-ups.
In 1984, Ellie Mohler began noticing changes in her eyesight. “It was like someone was putting darker and darker sunglasses on me,” she says. Within two weeks, she was completely blind in one eye and saw only shadows with the other. After diagnosis of MS from an MRI, Mohler opted for an aggressive and experimental treatment called plasmapheresis instead of the more traditional route of steroids.
Plasmapheresis separates plasma from the blood. The strategy is to remove harmful antibodies from the blood that may damage the nervous system. Although it is often used to treat other autoimmune diseases, the benefits of plasmapheresis for MS are still seen as inconclusive. Mohler’s first treatment was a success, returning her sight. She had three more treatments with some success. However, each treatment left her with some level of symptoms. Her exhaustion and limping increased, leading her to require a wheelchair for the past seven years.
When Mohler was first diagnosed, she was very scared. She didn’t know what MS was and didn’t know anyone who had it. Nor did she know that MS is rarely fatal. As she became more educated about the disease, she realized that MS was not going to be as limiting to her life as she had feared.
To accommodate her needs, Mohler and her husband built a single-level home and bought a minivan with hand controls and a ramp so that she can drive and be independent. They travel often to wheelchair-accessible locations such as Las Vegas. Her philosophy for coping with the disease is that “everybody has something they struggle with, whether it’s physical or emotional. This is just my struggle.”
Both Schutz and Mohler became aware of the Colorado chapter of the National MS Society after they had been living with MS for a while. Schutz has been involved with the MS Walk and some of its educational resources. With a connection made through the MS Society, she began working with the Department of Human Services’ Division of Vocational Rehabilitation to help people with various disabilities prepare for professional opportunities, including self-employment.
Schutz says getting MS has actually enriched her life. “If it weren’t for me getting MS, I would have never had this chance to help myself and others,” she says.
Mohler and her husband serve the Colorado chapter on the budget and finance committee, which helps to recommend where research funding should go. She believes that a cure for MS will be found within her lifetime.
The National MS Society, with help from each of its local chapters, is currently funding over 380 research projects around the world with $46 million dollars. The goal is to find better treatments and end the disease.
The Society recently launched a new campaign to raise awareness and funds for multiple sclerosis called “Join the Movement.” It focuses on the concept that while movement is fundamental to all humans, it is not a guarantee with MS.
Raising awareness and funds are just an element of what the MS Society does. There are opportunities for education, support and participation in every chapter.
