Can the MS battle be won?

Like most people who develop multiple sclerosis (MS), Rachael Chiasson of Abbotsford, B.C., was caught completely off guard when she experienced the first overt symptoms of the disease. Five years ago, Rachael, then 32, travelled to Calgary with her husband and two sons, Thomas, 4, and Jake, two months old, to visit her in-laws.

During that visit the vision in her right eye started to get blurry. "It seemed like I was looking through a broken lens. There was a milky, cloudy spot in front of my eye. As the day went on, it got worse, until I had no vision," says Rachael, who also felt pressure on top of her eye. The emergency doctor at Foothills Hospital gave her ibuprofen to reduce the swelling behind her eye.

Straight home to the doctor
She flew home the next day and was seen immediately by an ophthalmologist at Vancouver General Hospital, who told her she had a classic case of optic neuritis, a swelling of the optic nerve.

"I thought it was an infection in my eye, I'd take some antibiotics, and it would be finished," recalls Rachael. But the doctor recommended she see a neurologist at the UBC Hospital MS clinic. "I had no idea he was considering MS," she says. "I just panicked. I was so unaware of the disease. All I thought was, I'm going to be in a wheelchair. It was such a blow."

Follow-up tests
An MRI (magnetic resonance imaging), one of the critical tests used to diagnose MS, showed Rachael had three lesions on her optic nerve and two lesions on nerves that control the legs.

Suddenly, there was an explanation for the mysterious episodes of tingling and numbness she'd first noticed in her legs a few years earlier. After the diagnosis was confirmed, she was devastated. "It was almost depression at the start. I really thought this was it for life as I knew it," says Rachael, who came to Canada from New Zealand in 1991. But then, supported by her husband, she had to make some difficult decisions about the best treatment options and how to proceed in raising their two young children.

A diagnosis brings new challenges
The challenges and dilemmas Rachael faced are typical of those of most women newly diagnosed with MS. She also had to grapple with some critical questions for which there are no clear-cut answers. What causes MS and why did she develop the disease? How rapidly would the disease progress, and how would it affect her vision, muscles, balance, coordination, energy level and ability to walk? Could she be fully active as a parent raising two young boys, and for how long? Would she be able to continue working as a preschool teacher -- and would she want to? What steps, if any, could she take to prevent attacks, slow the progression of the disease and remain as healthy as possible?

Click to continue to learn more about MS...

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What is Multiple Sclerosis?
MS is a condition in which the body's immune system attacks and gradually destroys patches of myelin, which affects the transmission of nerve impulses. But researchers don't know exactly what causes the immune system to start attacking the central nervous system.

"We know the cause of MS involves a combination of genetic predisposition, plus one or more environmental triggers," says Dr. Paul O'Connor, a neurologist and the director of the MS clinic at St. Michael's Hospital in Toronto. "I personally believe it's not just one, but a series of triggers that interact to produce the disease. The evidence suggests two main environmental triggers may be viruses and vitamin-D deficiency."  

The prevalence of MS in Canada
MS affects as many as one in 500 Canadians and more than three times as many Canadian women as men; the incidence among women has tripled over the past 60 years. The disease is also more prevalent in Canada than in most other countries. MS can occur at any age, but it's usually diagnosed between the ages of 15 and 40. It's a frightening disease that often strikes without warning during a woman's prime career- and family-building years.

A more promising future for new diagnoses
Today, however, the prospects for a woman newly diagnosed with MS are more hopeful than in the past. New drug treatments help to reduce the frequency and severity of MS attacks, and slow the progression of disability in many patients. "These drugs transform the lives of many people with MS," says Dr. Luanne Metz, director of the MS clinic at Foothills Hospital in Calgary.

New research offers the promise of developing effective treatments for patients who aren't helped by existing drugs. And new approaches to managing MS, which involve an active, healthy lifestyle and complementary therapies, allow women to gain greater control over the disease.

Relapsing-remitting MS
Rachael was diagnosed with relapsing-remitting MS, the type of MS that affects most patients at the time of diagnosis. Relapsing-remitting patients experience clearly defined attacks (relapses), followed by complete or partial recovery (remission).

The majority will eventually develop secondary-progressive MS, in which the disease and disability get worse over time, but that shift can occur within five years or after 25 years or more. About 10 to 15 per cent of patients are diagnosed with primary-progressive MS, in which the disease gets continuously worse, with no clear relapses or remissions.

An unpredictable future with MS
Because the symptoms and the rate at which the disease progresses are so variable, doctors could not tell Rachael what to expect in the years ahead. She did learn, however, that a number of medications approved in Canada since 1995 have been shown to reduce the number and severity of MS attacks and slow the progression of disability in patients with relapsing-remitting MS.

"These drugs settle down the inflammation that occurs in the nervous system," says Metz. "Patients can have a more predictable life by having fewer attacks. The point of treatment is to prevent residual disability."

Click to continue for information on what medication Rachael was prescribed...

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Rachael's decision to try new medication
Rachael's neurologist recommended Rebif, one of the four first-line MS drugs (along with Copaxone, Betaseron and Avonex). Rebif, a type of interferon made from Chinese hamster ovary cells, affects the body's immune response to myelin. (Interferons belong to a family of proteins that occur naturally in the body, helping to regulate the body's immune system and fight disease). 

Although the drug has to be injected three times a week and costs her about $6,000 a year (the provincial health-care plan covers the other $16,000) and doesn't work for all patients, Rachael felt she had no choice. "I'm young. We had to do everything we could," she says.

Counter-attack measures
But Rachael wanted to do more than rely on medication to fight the disease. Though she had never exercised in her life, she started running, biking, doing Pilates and lifting weights. "I thought, If MS is going to break down my muscles and attack my motor skills, then I need to make myself fitter and stronger. The more running I did, and the more I lifted weights, the harder it would be for MS to attack my body," says Rachael, who gets up at 6 a.m. five days a week to run eight kilometres with her neighbour Charlene.

She also spends an hour lifting free weights at the gym three times a week. "I did a half-marathon last year. That was a big achievement for me," says Rachael, now a svelte 128 pounds on a five-foot-five frame, after shedding 35 pounds. "I've cut out eating sweets, too." Although first-line drug treatments are effective for many patients with relapsing-remitting MS, they don't work for everyone.

Cathy's story: chemotherapy
On Aug. 7, 2007, Cathy Nabuurs began the first of nine consecutive days of heavy-duty chemotherapy at The Ottawa Hospital. Unlike most people who undergo chemotherapy, Cathy wasn't a cancer patient. The 36-year-old mother of two in Charlottetown suffered from a rapidly progressing form of MS that threatened to put her in a wheelchair.

The standard MS drug treatments hadn't worked, so she opted for a radical experimental stem cell therapy that offered the possibility of slowing or stopping the progression of the disease -- if it didn't kill her. "I was scared. I knew one patient had died early on from the effects of the chemo," says Cathy. "The protocol of risks [the list of things that could go wrong] was as thick as a book."

Wiping out the immune system
In this gruelling procedure, Cathy was first given high doses of three drugs to completely destroy her diseased immune system. Then, on Aug. 17 -- her daughter Megan's first birthday -- Cathy received an infusion of blood-forming stem cells that had been extracted from her bone marrow a month earlier. Her doctors hoped that these stem cells would rebuild a new, healthier immune system that would not attack Cathy's myelin, the protective lining that wraps around nerves in the brain and spinal cord.

Although Cathy was very ill that day, she vividly recalls the cells being infused into her body through an IV. "It's very emotional. Here's your life going back into your body. This little bag of stem cells is so small. It's hard to believe that such a small amount could make such a big difference." Over the next few weeks Cathy remained in hospital, still highly vulnerable to infection, waiting for her new immune system to develop and grow. "You had to wonder if the stem cells would take," she says.

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Gambling with new procedures
Cathy was officially diagnosed in 2001, although she had symptoms of MS for a year. Before the experimental therapy last year, Cathy had suffered a prolonged attack that left her extremely fatigued, dizzy, in pain and limping badly. "I collapsed on the street even with the cane. I couldn't function with my five-year-old son," she says. Then, an MRI showed a very large new lesion on her spinal cord and the doctor said, "If that becomes active, you could lose the function of your legs."

By June 2008, it was evident that Cathy's high-stakes gamble had paid off. Since the cell transplant, Cathy hasn't had attacks or new lesions. She has more energy and stamina, and much greater mobility. "The other day I walked two kilometres along the Rideau Canal before I found any signs of limping," she says. "I just spent two hours with my kids at the playground and never sat down. I couldn't have done that before. If I can stay the way I am now, I'll be very happy." 

Helping with research for future MS patients
As one of 17 MS patients in Canada successfully treated in an experimental study, Cathy has good reason to be optimistic about the future. "Since the study began seven years ago, not a single patient has ever had a relapse. There's no evidence of disease recurrence, and no one is on an MS drug," says Dr. Mark Freedman, a neurologist and the coleader of the clinical trial with Dr. Harold Atkins, a bone-marrow transplant specialist at The Ottawa Hospital.

Tough decisions
When a diagnosis of MS changed her life five years ago, Rachael made some critical choices. Not only did she decide to go on the expensive disease-modifying drug Rebif, not knowing if it would slow the progression of the disease, but she also started eating healthier and became passionate about physical fitness for the first time in her life.

She also put her teaching career on hold so she could spend the early years with her two young boys while she was still physically capable. "I wanted to start skiing with my kids," says Rachael. "I help out on their sports teams. Those will be the memories they know, rather than that their mom is wheelchair-bound."

Rachael's progress and relapses
Since her diagnosis, Rachael has had only two major relapses -- one affecting her vision and one affecting her legs -- and she sometimes struggles with fatigue. "I didn't think I'd be this healthy five years down the road and be able to play sports with my kids and have a normal lifestyle. It's horrible to learn you have MS, but it's been a wake-up call to live each day and enjoy it," says Rachael.

She recently encountered a woman she'd met five years earlier in an MS orientation group. Rachael was shocked to see how much this woman's condition had worsened. "We were diagnosed at exactly the same time. She chose not to do the drug, and she didn't work out." She wonders whether she would be as healthy today if she had made different choices. "I still don't know if it's the exercise, the drug or both that helped me. I'm scared to give up either."

Click to continue for a list of symptoms of Multiple Sclerosis...

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Earlier diagnosis means a better prognosis
Multiple sclerosis (MS) can take years to diagnose. There is no single test or symptom that automatically confirms or rules out MS, and other diseases have similar symptoms.

Diagnosing MS early is important because studies show that starting drug treatment as early as possible helps to delay the onset of disability. "We're now providing drug treatment earlier in the course of the disease, and it's having a big impact," says Dr. Mark Freedman, a neurologist and the director of the MS clinic and the MS research unit at The Ottawa Hospital. "The response to treatment is much better than if treatment begins after five to seven years of untreated disease. We don't have a cure, but drug treatment can help to control the disease."

There are tests you can ask for that can help you find out earlier if you have MS.

Discuss any past or current possible symptoms with your family doctor, who may refer you to a neurologist. A neurologist will look for possible signs of MS, such as vision problems, lack of coordination or balance, weakness or altered sensation and reflexes.

An MRI (magnetic resonance imaging) is the most common and valuable test used to establish a diagnosis because it shows any damage to the brain or spinal cord. Other tests used to help confirm a diagnosis are a lumbar puncture (or spinal tap), which measures changes in cerebrospinal fluid, and evoked potential tests, which measure the speed of message transmission along nerves.

The signs of MS
Early symptoms of multiple sclerosis (MS) may include:
-numbness
-tingling or weakness in one or more limbs
-double or blurred vision, partial or complete loss of vision
-problems with balance and coordination
-dizziness
-unexplained fatigue.

Symptoms vary widely depending on what part or parts of the nervous system are affected. MS can be difficult to identify from symptoms alone because many other conditions may produce similar symptoms.

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This article was first printed in the October 2008 issue of Homemakers Magazine. Click to subscribe online and never miss an issue.

You can find more health features from the magazine in our Health & Fitness section.

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