Department of Medicine, Division of Neurology, Sunnybrook & Womenís.
In the past, doctors were often reluctant to deliver a diagnosis of multiple sclerosis (MS), because of its reputation as a largely untreatable, potentially crippling disease. Although MS can render a person unable to write, speak or walk, there are many cases where patients are only mildly affected.
Even today it still isnít easy to predict what course the disease will take. However, there is exciting research being done in this area. Gail Balfour, Editor of Womenís Health Matters had the opportunty to speak with Dr. Liesly Lee about MS, how it affects women and what may be in store for the future.
Q: How common is MS in Canada? The percentage in women sufferers is higher. Why is this - has it to do with hormones?
A: The prevalence rate in Canada is about 1 in a 1000 ó that is, for every thousand Canadians, one will have the diagnosis of MS. It is more frequent in women, ranging from 3:1 to 3:2.
Itís not clear why it is more common in women. There is some speculation that there is some genetic susceptibility; itís also possibly related to infections, and yes, there is also speculation about the possible protective role of hormones.
Q: What do you think is the most frequent misconception people have about MS?
A: The biggest misconception that all patients are severely disabled (i.e. will be in a wheelchair). Although many patients do have significant deficits, there are many that continue to be able to cope with their deficits and lead relatively productive lives.
Q: How difficult is it to diagnose MS? What other diseases does it mimic? What is the role of the MRI in diagnosis?
A: MS is a difficult diagnosis to make. There is no one test, and is based on a constellation of findings on the examination, the clinical history and paraclinical testing, which can include an MRI, evoked potentials or cerebrospinal fluid findings (from a spinal tap). The MRI can be very helpful in supporting the diagnosis, but can never make the diagnosis based on MRI findings alone. Patients are often mistaken as having chronic fatigue, lupus or fibromyalgia, as they share similar symptoms in the early stages.
Q: Are people with MS more prone to other autoimmune diseases? What about mental-health concerns such as depression?
A: There can be an association with other autoimmune diseases amongst MS patients, such as lupus. However, it remains controversial whether MS patients truly have a higher incidence with other autoimmune diseases. Depression appears to be more common with MS patients, that appears likely related to the disease itself, rather than purely related to the reaction of the diagnosis.
Q: Is there a stigma attached to MS? When people think of MS, many tend to think of the worst-case scenario - a crippling disease that confines people to wheelchairs. Do you find this is a common perception still? What percentage of MS cases actually ends up this way?
A: Patients commonly think of the worst-case scenario. Unfortunately, it has been estimated that about 50 percent of patients do become dependant upon an assistive device after about 15 years. Furthermore, more than 90 percent of patients do develop the progressive phase of the disease after 25 years. This is based upon the natural history data; with treatment, the outcomes remain to be seen.
Q: What are the first symptoms people with MS usually notice? What is the most common form of MS, and what can people expect from a diagnosis of this?
A: Common MS symptoms include persistent numbness, loss of vision, double vision, loss of strength, balance. The main point is that it is persistent and not transient (i.e. lasting days, not minutes, seconds or hours).
Q: What are some of the current popular theories of the causes of MS? Is it possible environmental hazards, a virus, or other exposures cause it? Are there any ways to protect ourselves from developing it?
A: Currently it has an unknown cause, although it is likely to be multifactorial Ė a genetic component, environmental exposure and possibly bad luck. Different experts place more emphasis towards these causes; some believe more strongly on exposure to a particular virus/bacteria or even something in the environment.
There is also clearly a genetic component towards the disease. The relationship between autoimmune diseases in general and MS remains uncertain. We cannot protect ourselves from developing it.
Q: What special precautions should women with MS take if they are pregnant or planning to become pregnant? Is there a chance the pregnancy will worsen the symptoms? What about medications - are they safe during pregnancy?
A: Generally, we advise against pregnancy if the disease is very active and the woman is rapidly deteriorating neurologically. Having said that, there is no evidence that pregnancy worsens the MS in the long run. Thus, if the woman is stable neurologically, and having a child is important to her/the coupleís relationship, it is encouraged (this is very different from the advice given 20 years ago).
The frequency of relapses appears to decline during the pregnancy, but is increased postpartum. The disease-modifying therapies and the steroids are not to be used during pregnancy.
Q: What are some common lifestyle tips for people with MS? Are there dietary concerns, special exercises or other therapies recommended?
A: Living a healthy lifestyle is what is important. Eating well, sleeping well, with a regular schedule is advised. Avoid extreme behaviours; try to avoid exposure to infections. It is important for the patient not to disengage from life, but to live it fully.
Q: What are some of the more common current treatments for the symptoms of MS?
A: To see their neurologist for the treatments for daily symptoms, that can have a big impact on their quality of life. The treatments available include: for fatigue (amantadine, modafinil); bladder frequency (oxybutinin); spasticity (lioresal, tizanidine); depression (citalopram, fluoxetine); and pain (amitripytilline).
Q: There has been some media coverage on new treatments they are trying, such as immunotherapy, nerve impulse conduction, remyelination and antigen therapies. What are some of the new therapies you have used?
A: Newer treatments under trial include blood brain barrier adhesion drugs (which make the blood vessels less leaky) such as Natalizumab, which is currently under investigation now in a phase III multi-centre trial at Sunnybrook. There are many other agents used with different mechanisms being conducted throughout the world.
Q: Do you believe MS research will have direct impact in other areas of research? For example, will discoveries here have a possible effect on Parkinsonís research, etc.?
A: There may be potential benefits of some of the medications used in MS with other autoimmune diseases and vice-versa, but that remains to be seen.
Q: What's the most exciting discovery made lately research-wise, in your opinion? What do you feel the outlook is for people with MS? Whatís new on the horizon?
A: The development of the disease modifying agents (the interferons
and glatirmer acetate) have been very encouraging over the past 10 years.
Although not a cure, it is a step in the right direction. The outlook is
hopeful for more effective treatments Ė these include bone marrow transplantation
and the Natalizumab described above.
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