Within five days in the spring of 2010, Juliet Scott went from running after a two-year-old in her job as a nanny to being unable to walk. Scott, then 25, was diagnosed with multiple sclerosis and hospitalized for a month.
For almost a year, she relied on a wheelchair, cane, motorized scooter or forearm crutches to get around.
But Scott, who lives in London, Ont., says her condition has improved dramatically since her last flare-up of symptoms in August, 2011. “I went on an 80-kilometre backpacking trek in the mountains this summer. I have been in canoes, hauling 50 pounds on my back,” she says. “I feel completely fine.”
Scott suggests her robust health is due to a gluten-free diet and trips to see a faith healer in Brazil.
But her reprieve from the disease may be less unusual than it sounds. A study from the University of B.C. found that up to 30 per cent of MS patients show improvements without treatment – at least in the short term.
The fluctuating nature of MS, especially in the early stages, is well known. However, the study, published in October in Multiple Sclerosis Journal, is the first to quantify improvements in the condition of patients who are not taking disease-modifying drugs.
The study confirmed that patients who are female, younger and have relapse-remitting MS – the most common form of the disease – have the greatest chances of improvement.
But researchers at UBC and Vancouver Coastal Health Research Institute discovered that up to a quarter of patients with primary progressive MS, a more severe form of the disease, also improved in the short term.
“What I found really fascinating is that everyone had the ability to improve,” says Helen Tremlett, the study’s lead author and an associate professor of medicine at UBC.
The study looked at clinical data of 2,960 patients who visited an MS clinic in B.C. between 1980 and 2004. Patients were assessed using the standard Expanded Disability Status Scale (EDSS).
A one-digit change at the upper end of the 10-point scale could mean the difference between walking with a cane and being confined to a wheelchair. At the lower end of the scale, a one-point change could mean going from frequent urinary incontinence to occasional loss of bladder or bowel control. However, Tremlett and colleagues found that patients with moderate disability in the middle of the scale were the most likely to improve.
Researchers only factored in improvements that were sustained over one to two years, Tremlett says.
But although the findings may sound promising, she notes the majority of patients in the study showed no change, or a worsening in disability.
MS is a neurological disease that attacks the protective covering wrapped around the nerves of the brain and spinal cord. Canada has one of the world’s highest rates of the disease, which affects up to one in 500 Canadians. The majority are diagnosed between the ages of 15 to 40, and three times as many women as men develop the illness.
MS is what’s known as a “snowflake disease” because each patient seems to have a different cluster of symptoms. Over time, however, MS tends to interfere with functions including vision, hearing, memory, balance and mobility.
There is no cure, although disease-modifying drugs such as beta interferon and glatiramer acetate may slow the progression of the disease.
Clinical trials in Vancouver and Montreal are under way to test the vein-dilating procedure pioneered by Italian vascular surgeon Paolo Zamboni, who proposed that narrowed neck veins are a cause of MS.
Also known as “liberation therapy,” the treatment has drawn criticism from researchers who have been unable to replicate Zamboni’s results.
Tremlett suggests the UBC study provides context for experimental treatments. If, for example, a researcher were to claim that a third of patients improved after a new treatment, Tremlett says, “I would say ‘great,’ but in clinical practice, a third of the patients improve as well, so maybe it’s not so great.”
Improvements in MS are notoriously difficult to quantify, however. Paul O’Connor, director of the MS Clinic at St. Michael’s Hospital in Toronto, notes the EDSS scale used to measure disability has a high margin for error. Two different neurologists examining the same patient within five minutes may come up with different results, he explains, adding: “That disability number can bounce around.”
O’Connor says that it’s normal for MS patients to have periods of improvement in the early years after diagnosis, particularly those with the relapse-remitting form of the disease. After a decade or more, however, many relapse-remitting patients transition into a progressive form of the disease and experience deterioration in arm co-ordination, leg strength and walking ability, he says. “Over the very long haul, they tend to worsen.”
Scott says she is aware that MS is a progressive disease. But after more than a year of good health, she adds, “it’s very easy for me to believe that I’m cured.”
She shares her love of hiking with her nine-year-old son and her fiance – who also has MS – and says she doesn’t dwell on the future. “If anything comes back, I’ll deal with it then.”