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An Unfortunate Distinction: MS Sets the Northwest Apart by Roberta Greenwood

Maureen Manley remembers when she was diagnosed with multiple sclerosis as a time of “devastation and determination.” A world-class cyclist, Manley began suffering blurred vision and exhaustion; her symptoms progressed rapidly and an MRI confirmed MS. Scared but determined, Manley began an inward journey through disease and into well-being. “I didn’t ask for the challenge of MS — sometimes it stinks — but I knew I could figure out what I could do. How I could work with MS, stop all the ‘shoulds,’ and learn to live well with this thing.”

MS is a chronic, unpredictable disease that attacks the brain, optic nerves and spinal cord, and is one of more than 100 autoimmune disorders. It can cause symptoms that range from mild numbness in the limbs to tremors, loss of balance and paralysis. Known as a “young person’s disease,” MS is most often diagnosed between the ages of 20 and 50, with women in their 20s and 30s more likely to develop MS than men. Even more perplexing is that the Northwest has a higher incidence of MS than almost anywhere else on earth.

According to the National Multiple Sclerosis Society (NMSS), approximately 400,000 Americans have MS, and 200 new cases are diagnosed weekly. Washington state is home to approximately 9,500 cases of MS, with women affected two to three times as often as men. MS occurs more commonly among people of northern European ancestry; emerging research indicates that people who lived above the 45th parallel in their formative years prior to age 15 have an increased susceptibility to the disease. According to Dr. Jane Buckner, a researcher at the Benayora Research Institute at Virginia Mason, vitamin D plays a role in immune response, and it’s believed that the lack of sunlight in the Pacific Northwest may play a contributing role in the high incidence of MS here.

SYMPTOMS AND PROGRESSION OF MS

The majority of individuals who’ve been diagnosed with MS live a normal life span; however, the progress, severity and specific symptoms of the disease can cause increasingly difficult limitations. As defined by the NMSS, there are “four courses” of MS — and each can bring with it symptoms that are mild, moderate or severe:

Relapsing-Remitting MS

People with this type of MS experience clearly defined attacks of worsening neurologic function. These attacks (also known as relapses or flare-ups) occur in almost 85 percent of people who are initially diagnosed with MS.

Primary-Progressive MS

This disease course is characterized by slowly worsening neurologic function from the beginning — with no distinct relapses or remissions. Primary-progressive MS is diagnosed in about 10 percent of all cases.

Secondary-Progressive MS

Following an initial period of relapsing-remitting MS, many people develop a secondary-progressive disease course in which the disease worsens more steadily, with or without occasional flare-ups, remissions or plateaus.

Progressive-Relapsing MS

In this relatively rare course of MS (5 percent), people experience steadily worsening symptoms of the disease from the beginning, but with clear attacks of worsening neurologic function along the way.

As with other autoimmune diseases, MS occurs when the body’s immune system identifies a toxin and produces antibodies to destroy it. MS symptoms begin when myelin (the protective insulation of the central nervous system) is “attacked” by antibodies and then replaced with sclerotic tissue. This hardened scar tissue damages nerve fibers, and in many cases severs them, which results in an interference in nerve signals. This interference can lead to numbness, loss of vision, fatigue, problems with balance and, although uncommon, paralysis.

CAUSES

While the exact cause of MS remains unknown, scientists believe that a combination of several factors is involved in the onset of the disease. MS is not contagious; it’s also not thought to be directly inherited. Some genetic factors can make certain people susceptible to the disease, and having a “first-degree” relative (parent or sibling) does increase the risk of developing MS. Researchers surmise that MS develops when a person is born with a genetic predisposition that triggers an autoimmune response from exposure to some environmental agent. Doctors aren’t required to report new cases of MS; researchers must depend on patients self-identifying, and it’s thought that MS is more prevalent than the current data suggests.

MS is known to occur more frequently in areas that are farther from the equator. An MS Society study is currently underway in Australia to test the theory of greater exposure to sunlight and naturally produced vitamin D as a deterrent to autoimmune disorders and MS. Dr. John Hibbs, a naturopathic physician at Bastyr University, explains that vitamin D is the most obvious connection that comes to mind in examining the latitude relationship with autoimmune disease. “The more that’s studied,” he says, “the tighter that argument gets.” Additionally, studies that look at environmental and industrial toxins, diet, or trace metal exposures are being monitored to see if they might cause or trigger the disease.

It’s also possible that exposure to certain viruses or bacteria in childhood may be linked to MS; inflammation and demyelination can be triggered by these viruses. Measles, human herpes virus-6, Epstein-Barr and Chlamydia pneumoniae are being studied to determine whether there is a connection. In 2003, the Journal of the American Medical Association published a study that suggested increased levels of immune antibodies that fight Epstein-Barr (common cause of mononucleosis and other autoimmune disorders) may be associated with an increased risk of developing MS. In 2006, it was reported that individuals who had been exposed to the Epstein-Barr virus were twice as likely to develop MS up to 20 years later. However, the NMSS cautions against directly attributing MS to Epstein-Barr.

MS is more prevalent in women of childbearing age than in any other group, yet it does not increase risks in pregnancy nor has it been implicated in infertility. In fact, according to Rosanna Snyder, manager of donor communications and marketing at NMSS, Greater Washington Chapter, many studies have shown that flare-ups are reduced during pregnancy, especially in the second and third trimesters. Pregnancy increases circulating proteins and natural corticosteroids which may contribute to decreasing relapses. “Clinical trials are being developed to observe if this phenomenon can be recreated,” Snyder explains. “This could be potentially a new path for treatment for women with the disease.”

Additionally, a study conducted at Stanford University found that women with MS may reduce relapses after pregnancy if they breast-feed their babies or delay restarting their MS medications.

DIAGNOSIS

MS presents several diagnostic challenges; the lack of consistent symptoms often requires physicians to eliminate other disorders before a definitive diagnosis of MS can be made. Several diseases, including Lyme disease, certain hereditary disorders, AIDS and collagen-vascular diseases, cause symptoms that are similar to those of MS.

Currently, there are no lab tests to determine whether a person has MS; the first step toward a diagnosis is for the patient to complete a comprehensive medical history. Additional tests, such as neurologic exams, spinal fluid analysis, measurements of visual evoked potential (VEP), and magnetic resonance imaging (MRI) enable the physician to eliminate other disorders before identifying MS. Generally, a diagnosis of MS is made once these criteria are met: damage in two separate areas of the central nervous system, evidence that the damage occurred during attacks at least one month apart, and all other causes have been ruled out.

TREATMENT

There is no cure for MS; with appropriate treatment most people can enhance their quality of life while managing their symptoms. Treatment plans are often a combination of medication, rehabilitation, self-care techniques and assistive devices. Manley, who holds a master’s degree in integrated wellness, conducts personal coaching and wellness training at her company, Spirit in Motion. What’s important, she says, is figuring out what will move your life forward. “It’s vital to select a holistic, integrated approach that works with your symptoms.”

Disease-modifying medications often reduce the frequency of flare-ups, the appearance of new symptoms or the progression of MS. There are six drugs that have received U.S. Food and Drug Administration approval for relapsing forms of MS, although none prevent recurring symptoms such as numbness or fatigue. High-dose corticosteroids are prescribed to treat the inflammation that accompanies most flare-ups or relapses. It’s important to note that these medications all present possible significant side effects, and medical supervision is critical to monitoring the patient’s well-being.

Many forms of complementary medicine are successful in improving the overall quality of life for MS patients. Diet and exercise, stress management techniques, hypnosis, acupuncture and yoga have been demonstrated to alleviate some of the pain or fatigue that MS patients report.

Gretchen Orsland, who was diagnosed four years ago, says that acupuncture and yoga have provided her with relief from the tension that often accompanies MS. “Yoga has helped me so much with my breathing and balance — something that I think about every day. I’m taking an MS Society-sponsored class that’s geared to the needs of each person in the class; some use chairs, some use mobility devices. It’s wonderful.” Although some physicians warn against using acupuncture to treat MS symptoms, Orsland’s neurologist is supportive. “Anything that helps me relax and release tension is vital to my well-being,” she adds.

Physical rehabilitation programs aim to improve overall fitness, improve energy management and address problems with mobility, speech and cognitive function, and adherence to an individual treatment plan is very important. “Every person is different,” explains Manley.
Dealing with the emotional toll MS takes can also be challenging. The difficulty in receiving the diagnosis can be frustrating; living with a disorder that is unpredictable, fluctuates from day to day and is progressive can contribute to high levels of anxiety. Mood swings, generalized anxiety and depression are not uncommon; in fact, according to the American Medical Association, “clinical depression is more frequent among people with MS than it is with the general population or even in persons with other chronic, disabling conditions.” Changes in the nerve fibers of the brain can result in emotional changes; even some of the medications used to treat MS can have a significant effect on emotions.

As patients grieve the loss of mobility, balance and the ability to work or play, it’s important they seek emotional support from family, friends and medical practitioners. Every person is different,” explains Manley. “Every body is different. People go through a sense of loss, a period of confusion. We want quick answers but with MS there aren’t any. It’s a process of finding your own roadmap to health.”

“Don’t give up, “Manley cautions. “You have to accept what’s going on with your body — but keep trying to find the options that bring you improvements. It takes a while to figure this disease out.”

EXPLORING NEW POSSIBILITIES

Clinical trials and emerging research hold great promise for future treatment and even a possible cure for MS.

Early this year, Canadian researchers released findings that suggest MS may be put into remission by suppressing the body’s immune system through a personalized form of cellular therapy. U.S. researchers are studying the use of robotics to improve balance and mobility, the MS Lesion Project focuses on the myelin-stripped areas of the brain to predict the best individual treatment, and an international team is studying the ability of science to stimulate the brain to repair damaged myelin.

Locally, several promising clinical studies are underway at local hospitals and treatment centers. The MS Center at Evergreen Healthcare Center is conducting a number of studies regarding pain management, memory loss and walking ability, while the Department of Veterans Affairs is conducting a cognition study for both veteran and non-veteran patients.
While there is no cure for MS, Snyder reminds people that there is information and support available to everyone who has the disease, whether they are newly diagnosed or have lived with it for a long time. “It’s possible to enhance health and wellness, maximize productivity, retain independence and deal with emotional and social challenges,” she concludes. MS affects the individual, the family, the community; we seek not only to fund research but to support people affected by the disease. Support is just a phone call away.”

Roberta Greenwood is a frequent contributor to Seattle Woman.

NATIONAL MULTIPLE SCLEROSIS SOCIETY, GREATER WASHINGTON CHAPTER

The Greater Washington Chapter of the National Multiple Sclerosis Society provides programs, services, education, information and support to 9,000 people living with MS and their 50,000 family members and friends. It is a vital resource in an area where there are more cases of MS than anywhere else on earth.

www.mswashington.org
206-284-4254

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