MS sufferers look to Mary Jane for relief

    1 of 1 2 of 1

      For Brenda Worthington, the most frustrating aspect of multiple sclerosis is its unpredictability. "There is no schedule to MS," Worthington told the Georgia Straight. "It's like a demon that just decides."

      Worthington experiences trigeminal neuralgia, a symptom of MS that manifests on the right side of her face. "It was brutally painful," she said by phone. "A very stabbing, electrical pain, which can last for less than a second or up to 10 minutes.”¦It would come and go without any warning."

      Worthington was operational manager for a floor-coverings wholesaler when she was diagnosed with MS in 1979. She is one of between 55,000 and 75,000 Canadians who suffer from it. According to the MS Society of Canada, where Worthington volunteers, women are more than three times as likely as men to carry the disease.

      The society describes MS as an attack on the protective myelin coverings of the central nervous system in the brain and spinal cord. Although the causes of MS are not completely understood, most researchers believe it to be an autoimmune disease, meaning the body's immune system has turned on itself and is actually causing the damage.

      According to Dr. Helen Tremlett, an assistant professor in UBC's neurology department, primary treatments for MS manipulate or control the immune system to stop it from attacking the nervous system. A small number of medications called immunomodulatory drugs are the first line of response.

      "These drugs are rather disappointing, only being partly effective," Tremlett said, speaking to the Straight from an MS research facility at UBC. Plus, there is a "not-so-pleasant range of side effects".

      Kim Maffin, a contract manager who has MS and is married to broadcaster Tod Maffin, told the Straight that immunomodulatory medications do not necessarily deal with the symptoms associated with the disease. Maffin, who blogs on MS at todmaffin.com/blogs/ms/, discovered she had the disease in 2004. She visited the doctor for double vision, a telltale sign of MS, and was quickly diagnosed.

      "Right now, about 75 percent of my body is numb," she said from her home in Vancouver. "And with that, when the numbness is really bad, I get sort of a burning-pain sensation."

      She added that there is "a whole bucket of symptoms" associated with the disease. "If you did an interview with a dozen people with MS, you will never find two of us the same."

      Maffin said that a lot of people with MS rely on marijuana as a complementary therapy. She recalled an episode of David Suzuki's The Nature of Things in which a joint was passed around a circle of people with MS at Vancouver's Compassion Club. One man's tremors were so bad that he could not even hold the joint to take his first toke. Someone helped, lifting the joint to his lips. "And within literally three seconds, the tremors were gone," Maffin said. "It is profound."

      Tremlett said that anecdotal evidence from people with MS suggests that marijuana is helpful, but clinical trials have not proven its effectiveness. She said there is a "potential mechanism", which could account for the positive responses. Tremlett explained that there are cannabinoid receptors found on pain pathways in the brain and spinal cord. It is believed that because pain is mediated through those pathways, cannabis is able to offer relief.

      In 2005, a drug called Sativex was approved in Canada for the treatment of MS-related pain. It consists of various extracts from the marijuana plant and is administered via a mouth spray. "And so it's in replacement of people smoking an illegal substance," Maffin said.

      Tremlett noted, however, that although Sativex has been approved for prescription use, the clinical evidence for its effectiveness has also been "pretty minimal".

      But for some members of Vancouver's MS community, the benefits of Sativex cannot be measured in clinical trials. For those who might prefer the world not know about marijuana use, Sativex can serve as a socially acceptable substitute, without the pop-culture stigmas.

      While she stated that she has never smoked marijuana, Maffin knows many people with MS who have. Sativex allows individuals to experiment with a potentially helpful therapy without a potentially embarrassing controversy, she said.

      Medical marijuana is by no means the only alternative treatment for MS. Worthington provided a seemingly endless list of complementary therapies. "I've done bee pollen, bee stings, emu oil, acupuncture, and I'm in an adaptive yoga class right now," she said, noting that yoga is suprisingly effective in controlling symptoms.

      For Worthington, one yoga class a week has improved her life. "As far as, say, doing transfers from a wheelchair to some other chair or to the washroom, it's just made a difference," she said.

      Such complementary treatments are all about breaking the negative cycles of MS, Tremlett said. "If you can get the person out of that vicious circle of not feeling very good, losing their general fitness, not sleeping well”¦that's a big issue."

      She noted the importance of giving people the ability to deal with their pain better. "It's not that simple, but that is often why people need this multifactorial approach where you don't just throw drugs at the problem," Tremlett continued. "That you deal with lifestyle issues perhaps before you move on to drug treatment."

      Worthington's latest top pick for dealing with MS is diet-related: "increasing vitamin D and the use of omega-3 oils". She eats salmon at least twice a week and takes daily supplements of both salmon oil and vitamin D. Worthington swears that this diet has helped with fatigue and mobility.

      So what is the best therapy for MS? "It's the general things that every doctor tells every human being on the planet," Maffin said. "My neurologist, when I was diagnosed, told me that the best treatment that I could give myself was to make myself the healthiest person I can."

      She said more attacks are inevitable, despite avoiding the usual triggers. "Don't be overweight, don't have high blood pressure, and don't have high cholesterol," she said.

      In consultation with her doctors, Worthington has never relied on conventional treatments for MS. "It was never appropriate and they never asked me," she said. And so Worthington's time with MS has consisted of one experiment after another, making complementary therapies the norm. Treatment depends on the symptom, she said, adding, "We all have our own symptoms."

      Comments