Big or Small, a Change in Your MS Symptoms is Something to Talk About
Here’s what you need to know about MS disease progression and why catching symptom changes early is so important.
When you have multiple sclerosis (MS), paying attention to changes in your symptoms is essential to living well. That’s because symptom changes can be a sign your disease is progressing. Be sure to share any changes, physical or cognitive, with your doctor. “With scientific advances, you can slow down the progression of disability and reduce the number of flare-ups,” explains Dr. Alexander Saveriano, assistant professor at McGill University and neurologist at The Neuro (Montreal Neurological Institute-Hospital).
MS is a chronic autoimmune disease affecting the central nervous system. The immune system attacks parts of the brain and spinal cord, specifically the myelin, which is the protective covering that surrounds our neurons. “If you picture a wire (the neuron being the wire), the myelin is the insulation around it. When the myelin is damaged, the electrical conduction across the wire is impaired, which can cause a variety of neurological symptoms.”
Canada has one of the highest prevalence rates of MS in the world, with an estimated 90,000 affected. While it’s most often diagnosed in individuals aged 20 to 49, MS affects many different age groups. The disease is more common in women than in men, at a ratio of about three to one.
MS is unique and different for everyone
No two experiences with MS are alike, not only because of the types of symptoms that can appear, but because there are different types of MS, and everyone is at a different stage of progression. “There’s a big spectrum of the disease,” says Dr. Saveriano. “Some people are more severely affected and other people are minimally affected.”
Around 15 per cent of those with MS are diagnosed with primary-progressive MS (PPMS), the form of the disease characterized by a slow worsening of neurologic function without defined relapses. It may stabilize for periods of time, but overall, there are no periods of remission. About 85 per cent of people with MS are initially diagnosed with relapsing-remitting MS (RRMS). “This form of MS involves relapses, which appear as attacks or flare-ups where symptoms suddenly get worse,” explains Dr. Saveriano. “In between those attacks, there are periods of remission where symptoms improve or go away completely.”
Most people with RRMS will eventually develop secondary-progressive MS (SPMS). In SPMS, relapses become less frequent, but symptoms progressively worsen. “These patients stop having so many relapses, but despite that, there’s a more gradual decline in function. There’s a worsening that happens slowly over time,” says Dr. Saveriano. In SPMS, the inflammation decreases, leading patients to have fewer relapses. However, the nerves themselves begin to be damaged, which causes a worsening of the condition.
Symptoms are unpredictable and vary greatly
Common physical symptoms of MS include weakness of the limbs, spasticity (stiffness in the limbs), incoordination, impaired balance and sensory issues (such as numbness of the hands and feet and neuropathic pain).
Between 40 and 70 per cent of people with MS experience cognitive symptoms, what’s called cog-fog. “As patients report it, their thoughts take longer to develop, and the processing speed of information is slowed down. It feels like their brain is in a fog,” says Dr. Saveriano. Cognitive changes may include memory problems, difficulty concentrating and trouble finding the right words.
Spot the signs of possible progression
If you’re living with MS, look out for signs that your MS is changing and potentially progressing. “Disease progression can change people’s lives significantly, in the sense that typically it involves a worsening of physical functioning, specifically walking. Sometimes that’s a decrease in speed and reduced endurance.” Other symptoms that patients can experience as the disease progresses are a worsening of cognitive problems, increased fatigue, and bowel or bladder issues.
Symptom changes can be subtle and gradual, so they may go unnoticed if you aren’t looking out for them. Your symptoms may become more challenging, and, while it may seem strange, you may even experience fewer relapses, not more. It’s normal to feel scared that things are changing, but it’s crucial to discuss these issues with your doctor and be a vocal advocate for your health.
Track any changes in your symptoms
Monitoring changes and communicating anything unusual to your doctor can be important to your care. According to Dr. Saveriano, “Tracking symptoms helps the neurologist determine if the disease is stable or not. If things are getting worse, that can have an impact on treatment selection. It also helps us evaluate if somebody is entering the progressive phase of the disease.” Studies have shown that the earlier changing symptoms are addressed, the better.
Because MS symptoms can fluctuate from day to day, it’s tricky to keep track of symptoms on a daily basis. Dr. Saveriano tells his patients to be cognizant of the overall patterns that happen over the course of months. For example, can you walk the same distance that you could a few months ago? Use this questionnaire to track your symptoms and guide discussions with your doctor.
Take charge of your MS
There are steps you can take to decelerate disability progression and decrease the frequency of flare-ups, starting with diet, exercise and medication. Healthy lifestyle measures can help you manage some of the symptoms. Those involve things like a healthy, balanced diet, physical exercise, avoidance of smoking, physiotherapy and rehabilitation.
By slowing down the buildup of irreversible damage and reducing the number of relapses, early disease intervention can improve long-term health and well-being. “We’re fortunate that we have more treatment options than ever before to manage MS in its different forms. There have been advances in recent years that offer promise and hope for many patients for whom there were no other options in the past.”
And remember, any symptom change—no matter how small—should trigger a discussion with your doctor so that you can work together to make the right plan for you.
Learn more about how to take charge of your MS at myrules.ca.