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Casting A Wide Net: Options for Treating Multiple Sclerosis by Karen West

Twenty-three years after being diagnosed with multiple sclerosis, Janet Goldenbogen-Self is still walking, maintaining her energy and feeling better than the day her first MS attack left her temporarily blind in one eye. Diedra Roesijadi says three years after her diagnosis, she is now in the driver’s seat and has learned how to keep her MS symptoms at bay. Neither of them are using the recommended disease-modifying drugs. Instead, they are teaching their bodies to heal themselves by altering their diets, lifestyle and nutritional habits.

These women are among a growing number of people who are taking their own unconventional paths to treating MS, a chronic, often disabling disease that attacks the central nervous system, (the brain, spinal cord and optic nerves.) It’s a complex — and for now, incurable — autoimmune disease, in which the body’s own defense system attacks the fatty substance (myelin) that surrounds and protects nerve fibers in the brain and spinal cord. The progress, severity and specific symptoms are unpredictable and vary from one person to the next, ranging from numbness, loss of balance and vision problems to more severe pain or paralysis.

Because MS takes on many forms and affects each person differently, figuring out how best to treat it is easier said than done. Do you start with expensive, and sometimes painful, drugs that need to be injected? Do you use natural or alternative therapies, such as lifestyle changes, meditation or acupuncture? Should you experiment with newly approved oral drugs that are just now becoming available?

Approaches to MS therapies vary as much as the people who have the disease. Some are obsessed with the “MS Diet” and use it exclusively, while others view conventional disease-modifying drugs used worldwide to treat MS as a godsend. “It’s actually easier to take a shot every day than to live ‘against the grain’ — fighting off the advertising, the societal influence, the actual labor of homemade everything,’’ writes a California woman on the Seattle-based website, www.MomsWithMS.com. “I am thankful that because of Western medicine, I have the luxury to still have some sort of prevention and weapon against this condition.’’

The National MS Society estimates that as many as 75 percent of the approximately 400,000 Americans with MS use some form of complementary and alternative medicine, known as CAM. This includes naturopathic medicine, meditation, acupuncture, chiropractic and physical therapy, massage, tai chi and yoga.

For 12 years, Gail Cook had been combining weekly shots with a low-fat diet, yoga, running and taking supplements of vitamin D and evening primrose oil. She stopped having flare-ups under this regimen and has since stopped taking the drugs altogether. “My neurologist said that the current thinking was that if you hadn’t had an exacerbation for more than 10 years, it was probably worth trying life without the drugs,’’ Cook says.

While many people combine CAM with their conventional drug therapy, others, like Roesijadi and Goldenbogen-Self, cannot tolerate or simply choose not to inject themselves with drugs.“I believe the more toxins you can keep out of your body the better,’’ says Goldenbogen-Self, a registered nurse and holistic health counselor in Port Townsend. “When I think about how I used to be, I really think overall I’m better today, still with ever-changing symptoms.’’

The difference now, she says, is that she has integrated many tools to help manage symptoms and stay balanced. Soon after her first attack, even before diagnosis confirmed her MS, she stumbled upon Judy Graham’s book, Multiple Sclerosis: A Self-Help Guide to Its Management. “It literally almost fell off the shelf at the store one day. Her book was my MS lifesaver.” It helped her understand the link between nutrition and MS and motivated her to study natural approaches, leave traditional nursing and become a naturopathic educator. “I immediately cleaned up my diet and cut out most dairy, caffeine, sugar and animal products. I started feeling better right away, then needed to become a detective to discover which foods triggered my symptoms.’’

Roesijadi agrees, saying: “Nutrition is my medicine.’’ Like most newly diagnosed MS patients, Roesijadi, an athletic 30-year-old, initially started on drug therapy. But her weekly injections made her feel like she had the flu all the time. The flu-like symptoms wouldn’t go away so she eventually tried a different drug with the same results. She went on yet a third drug, but had a violent reaction to it, developing rashes on her skin and experiencing bouts of vomiting. “I felt worse taking the drugs than the MS made me feel,’’ she recalls. “The drugs just weren’t an option for me.”

She sought help from a naturopath who suggested a lifestyle makeover, including cleaning up her diet and taking supplements, such as fish oil and vitamin D. “I immediately felt better,’’ she says, crediting 80 percent of her improvement to a gluten- and dairy-free diet. “I have slowly but surely gotten into the driver seat and am controlling my MS. If I go off the wagon and have a cookie, I feel lethargic and disoriented.”

Many CAM therapies include common sense approaches, such as a healthy diet, exercise and plenty of rest. Others are more controversial, such as medical marijuana and even using the saliva of leeches. (University of Washington clinical researcher and naturopath Michelle Sexton is conducting a study to determine if agents in marijuana can temper the autoimmune response associated with MS.)

The National Multiple Sclerosis Society and most neurologists recommend MS patients treat the disease primarily with one of the seven conventional drug therapies approved by the Federal Drug Administration. Dr. Mariko Kita, who specializes in MS at Virginia Mason and who is considered one of the top neurologists in her field, believes one of the most important keys to managing MS is to “be your own advocate.” She views CAM options as complementary to other medical approaches. “To embrace one at the categorical exclusion of the other is probably not wise and does not reflect treating the whole individual,’’ she says.

She urges people to consider their own cases individually: Ask questions and scrutinize both traditional and complementary treatment options before making decisions about treatment plans. “Regardless of what treatment choices one makes, I would recommend that these decisions be revisited routinely and the disease be monitored to be certain that therapy is being optimized for that individual,’’ Kita says.

Dr. Laurie Mischley, a Seattle naturopathic physician who scaled down her practice to devote time to research and to finish her upcoming book, Natural Therapies for MS, believes in the healing power of nature and that patients are best served when they have a team of competent providers with varying philosophies. “I’m a huge believer in individualized medicine,’’ says Mischley. In addition to diet and nutrition, naturopathic physicians might use acupuncture, plants or herbs to treat the whole person, not just the disease.

Dr. Marco Vespignani, a naturopathic physician who took over Mischley’s practice at the Seattle Integrative Medicine clinic and is co-authoring the book with her, agrees, saying he provides patients with as much information about the disease as possible and lets them decide how best to treat it. His strategy is to remove any external assaults on the body and allow it to heal itself. “When you improve somebody’s overall health, they are less symptomatic.”
Regardless of your choice of treatments, almost everyone with MS agrees that adopting some form of CAM therapy is beneficial.

POPULAR ALTERNATIVE THERAPIES

THE “MS DIET”
The standard American diet — high in dairy, fat, refined sugar and processed foods — has been linked to MS. Specifically, there are numerous studies (epidemiological data) that link diets high in dairy, pork and beef with development of the disease and that show fish consumption to be protective.

Mischley cites data from Harvard-trained neurologist Dr. Roy Swank, who between 1935 and 1948 studied development of MS throughout Norway. He discovered high levels of MS inland, in the farming and dairying districts, and found very low levels in the coastal fishing villages. When he analyzed the data, he found that butterfat was associated with MS and fish consumption was protective against the disease.

The results of his research were a turning point in MS research and his publication in the New England Journal of Medicine in 1952 was the first to suggest an association between diet and MS. As a result, hundreds of MS patients have adopted Swank’s “MS diet” that excludes red meat and pork and is extremely low in fat, dairy and processed foods.

“The relationship between MS and diet is a complicated one,’’ says Mischley. “What we don’t know is whether changing your diet once you already have the disease will affect the progression.’’ Another unknown is the mechanism by which diet may affect MS. “It may not be that red meat and pork are ‘bad,’ but that diets high in fish, and presumably fish oil, are protective because of their anti-inflammatory properties.’’

While there haven’t been sufficient clinical studies to prove these theories, Mischley says published research has shown that dairy products can fool a body’s immune system into attacking myelin. This is significant because MS is a disease of an overactive or ill-regulated immune system. “I do believe dairy has the potential to aggravate the course of MS,’’ says Mischley. She explains that research shows more than 60 percent of individuals with MS make antibodies to dairy, whereas only 18 percent of individuals without MS have these antibodies.

Mischley is not only concerned about the chronic irritation to the immune system, but about something immunologists refer to as molecular mimicry — there is a protein in dairy that looks just like myelin. “If you make antibodies to dairy, it stands to reason that each bite/sip of dairy protein will trigger your immune system to increase production of these antibodies. Your immune system is trying to ‘defend’ against the dairy, but can’t distinguish dairy from myelin. “Why not stop eating dairy and see if your disease doesn’t quiet down a bit?’’ suggests Mischley.

VITAMIN D
The Pacific Northwest has the highest incidence of MS in the U.S. And most scientists agree that the greater your distance from the equator, the greater your chances of developing MS. “The link between vitamin D and MS was first proposed more than 70 years ago, but we are only now beginning to study whether administration of vitamin D may improve the course of the disease,’’ says Mischley. “We do know that individuals with low vitamin D are more likely to develop MS and that low levels of vitamin D are associated with a more severe disease. What we don’t yet know is whether giving vitamin D will improve the prognosis of the disease, and if so, what is the best form and dose, and whether or not there is an ideal blood level of vitamin D to strive for.’’

ACUPUNCTURE
Goldenbogen-Self, who teaches and practices holistic health, therapeutic touch and Reiki, also uses acupuncture regularly to keep her MS symptoms at bay. She says these methods of “energy medicine” remind the body/mind/spirit to return to order.

Some people with MS report that acupuncture provides some relief of symptoms such as pain, muscle spasms or bladder control problems. While acupuncture has been used for centuries to treat a variety of conditions, it is only since the 1970s that it has gained popularity in this country. To date there have been no controlled clinical trials to evaluate the safety and efficacy of acupuncture in treating people with MS.

EXERCISE
Most doctors agree that exercise is beneficial but caution patients to be careful because extreme heat and too much physical exertion can trigger MS symptoms. Exercises such as tai chi and yoga can lower stress, reduce stiffness, increase mobility, energy, balance and flexibility. In addition to improving your overall health, aerobic exercise reduces fatigue and improves bladder and bowel function, strength and mood.

STRESS MANAGEMENT
For many MS patients, their mind is the most powerful tool to control pain and other symptoms. Because stress can trigger flare-ups, meditation, massage, self-hypnosis or even cognitive behavioral therapy (positive attitude) can help.

“MS is tough,’’ Goldenbogen-Self says. “Each day symptoms present surprises — some days better, other days worse. Whether it’s quiet meditation or prayer, discovering new recipes, listening to inspirational audios, acupuncture, talking with a friend or making time for hobbies, living a balanced lifestyle is absolutely crucial — it’s no longer an option.”

Karen West is a Bainbridge Island-based freelance writer and frequent contributor to Seattle Woman.

WEBSITE UNITES MOMS WITH MS

When Kristin Bennett couldn’t find a website for young mothers with Multiple Sclerosis, she quickly found a solution. She created her own: www.MomsWithMS.com.

She developed the website in July 2009 after having a relapse of her MS within three months of having her second daughter. “I was shocked that I couldn’t find any sites specifically for moms with multiple sclerosis, considering the demographics of when women are typically diagnosed and the correlation to fertile years.”

Bennett, with a background in computers and design, says the website is an online community providing peer support to moms who have been diagnosed with MS. Women are most likely to be diagnosed with MS between the ages of 20 and 40, and her site has grown quickly with nearly 500 members representing 12 countries. “It’s a place we come together to support each other and compare notes about what we learn through this journey of life as a mom with MS,’’ says Bennett, who was diagnosed in 2001.

Updates and other news about MS are also frequently posted on the group’s Twitter account @momswithms.

My Story
by Karen West

Every hour of every day, someone is diagnosed with multiple sclerosis. My day came Nov. 20, 2009. After eight weeks of mobility, balance and vertigo issues — and dozens of medical tests — it was determined that I have “relapsing-remitting” MS, meaning I could have long periods of “remission” as opposed to rapid progression.

Discovering I had MS was a relief. It meant I didn’t have brain cancer or heart disease as my doctors initially feared. But the sense of relief quickly turned to a punch-in-the-gut feeling when I realized I was joining 400,000 other Americans who have this incurable disease. The more research I did, the more frustrated and scared I became. With MS, there are more questions than answers (and those are mainly theories and predictions). What’s the cure? There isn’t one. What causes it? No one knows for sure. (It could be genetic, linked to viruses or other environmental/lifestyle factors.) What’s my prognosis? Only time will tell.

The only thing certain about multiple sclerosis is its uncertainty. The disease — which interrupts the flow of information between the brain and body and stops people from moving in a normal fashion — affects everyone differently and it doesn’t play fair. It can fool you into thinking you are fine for several months — even years — before suddenly robbing you of your sight or feeling in your legs or arms.

The most common way to guard against future MS attacks is to treat it with disease-modifying drugs. They are designed to alter the immune system, preventing it from destroying the protective covering (myelin) of the brain and spinal cord. The problem is that it is often unclear whether conventional drugs are working, and responses are as varied as the patients. Still, studies show some success and for me, drug therapy is like an insurance policy on an unknown future.

I chose what appeared to be the lesser of all medical evils: Copaxone, which I inject into my body every day. But the only real effect I’m feeling is the drain on my bank account and the unsightly and painful welts on my arms, legs and hips. I personally don’t have faith in the drugs alone and believe that you have to be your own advocate with this disease, analyzing your lifestyle — physical, mental and spiritual — and figuring whether stress, food, smoking or other things trigger flare-ups.

Shortly after my diagnosis, I got a head start in figuring these things out through a five-week course on MS (taught mainly by my neurologist Dr. Mariko Kita) — an eye-opening, worthwhile series of seminars on every aspect of the disease. My “aha” moment came during a session on “MS and Nutrition” taught by Dr. Laurie Mischley, a naturopathic physician in Seattle who specializes in MS. She laid out convincing research that links MS to dairy, high-fat and beef diets. My husband hasn’t had a sip of milk since, and I am still struggling to eliminate dairy, sugar, beef and pork from my diet.

But the sessions inspired me to take a “more is better” approach to treating my MS by combining my own research with the knowledge and advice of neurologists, naturopaths, physical therapists and holistic educators. By casting the widest net possible, I can keep this disease from taking over my life.

©Copyright 2010, Caliope Publishing Company