Newly Diagnosed

MS is a continuous disease process because it progresses through different stages over time. Everyone with MS has a unique disease course that can vary widely in severity, symptoms, progression rate, and response to treatment. Based on their medical history and an exam by a neurologist, people may be initially diagnosed with one of the following: 

Radiologically isolated syndrome (RIS) refers to demyelination seen on MRI which is suggestive of MS, but without any physical symptoms or signs of the disease. Nearly half of all people with RIS will be diagnosed with MS within ten years. 

Clinically isolated syndrome (CIS) refers to a single episode of neurological symptoms suggestive of MS. Not everyone with CIS will be diagnosed with MS, however over the longer term, about 80% of people develop more MS disease activity that leads to a diagnosis of MS. Regular follow-up with a neurologist and brain imaging may be recommended to ensure appropriate treatments and supports are ready at the right time.

Relapsing-Remitting MS 

Between 85-90% of people living with MS are initially diagnosed with relapsing remitting MS (RRMS), characterized by neurological symptoms called relapses (also called attacks, exacerbations, and flare-ups), followed by complete or partial recovery (remission).  

Progressive MS 

Some people with RRMS will transition to a phase of the disease called secondary progressive MS (SPMS). This phase of the disease has fewer relapses with increasing disability progression. The rate of worsening is different for everyone and typically is more gradual than the worsening experienced with MS relapse. 

About 10% of people will be diagnosed with primary progressive MS (PPMS). PPMS is characterized by a slow accumulation of disability, which usually doesn’t include relapses. Overall, there are no periods of significant improvement or return of function over time. PPMS is usually diagnosed later than other forms of MS and affects men and women equally.  

Brain Health 

Choosing a healthy lifestyle can help to maintain your brain reserve and keep your brain healthy. This means staying active, keeping a healthy weight, limiting alcohol, quitting smoking, sleeping well, and managing other health conditions like high blood pressure and mental health.  

MS Relapses 

Relapses are defined as new or worsening neurological symptoms that last at least 24-48 hours. Relapses are caused by a new onset of inflammation in the brain, spinal cord, or optic nerves. Relapses may last 4 to 6 weeks or up to several months. Relapses can be mild, causing symptoms like numbness and tingling, and often improve without treatment. Relapses that are more serious and interfere with your daily functioning may be managed with steroids.  

Between relapses, symptoms often improve and may return to normal. These periods are called remissions. Some people might go years without a relapse, while others may feel different from day to day. It’s normal for old symptoms to come and go. Many people experience improvements in their symptoms after a relapse, but some people may not recover completely and are left with some permanent changes. Starting an MS medication as early as possible is important to help prevent relapses and to slow disability progression. 

Occasionally, some people experience pseudo-relapses (or pseudo exacerbations). A pseudo-relapse in MS is a temporary flare-up of old symptoms triggered by factors like infections, stress, fatigue, or overheating. The symptoms usually improve once the trigger stops. Pseudo-relapses don’t mean that your MS is more active or getting worse.  

In MS, the immune system does not behave normally. This leads to inflammation that damages the protective covering around nerve fibers (myelin). Over time, the nerve fibers are also damaged. The damage (lesions) blocks or slows down communication between nerves and the body. This causes neurological symptoms like weakness, tingling or numbness, and changes in thinking or memory. 

MS can be described as active or inactive. Relapses and new or growing lesions seen on MRI scans, or both, mean MS is active. When there are no relapses or visible changes on MRI scans then MS is inactive. However, even if MS is inactive a person with MS may still have ongoing symptoms. Neurologists use MRI scans, physical exams, and other biomarkers (blood or spinal fluid tests) to check if MS is active or not.  

Each person will experience MS differently. This includes how their disease progresses. Disability progression can result from relapses. Progression also occurs independent of relapses due to ongoing inflammation and other processes in the brain and spinal cord. Both play a role in disability progression over time, starting in the early stages of MS and continuing throughout the disease.  

Brain reserve is the brain’s ability to protect against damage due to disease or aging. People with more reserve may experience more damage to the brain without showing any symptoms. The brain also has some natural ability to repair itself. As we get older, this ability decreases, and the brain can’t repair itself as well. In MS, this natural loss of brain reserve can make old damage show up as disability. There are currently no medications to treat nerve repair (remyelination) but this is an area of ongoing and promising research. 

Disease-modifying therapies (DMTs) 

DMTs reduce relapse rates, reduce the number of lesions (damaged or active disease areas) within the brain and spinal cord and delay progression of disability. The best course of action is to control inflammation and prevent irreversible tissue damage early on. Current treatments target the inflammatory process of MS. They are not generally effective for people diagnosed with progressive disease without inflammatory activity as they cannot reverse nerve damage or disability that already exists.   

Individual lifestyle, disease course, known side effects, and the potential risks and benefits of the different therapies will be part of the discussion with a neurologist and MS healthcare team. Each person’s body or disease can respond to medications in different ways. These medications are expensive. Assistance with treatment costs varies among provincial, territorial, and federal drug plans and private insurance companies. Reimbursement criteria will also vary between drug plans. 

Symptom management 

MS symptoms can be managed through medications, rehabilitation, supportive counseling, and adopting a healthy lifestyle like getting regular exercise, eating a balanced diet, quitting smoking, limiting alcohol intake and practicing good sleep habits.  

Steroids 

Steroids can lessen the severity and the length of an MS attack. They speed up recovery when a relapse is affecting your ability to function. Steroids come with side effects for some people. Over the short term, irritability, difficulty sleeping and stomach upset are common and can be managed with medication. Over the long term, steroids can cause problems with bone health, and eye health. For this reason, they’re used cautiously. Research suggests that while steroids are very helpful in managing a relapse, ultimately, outcomes are not affected.  

Adopting a Healthy Lifestyle 

The goals of exercise are to improve aerobic endurance, muscular strength, flexibility, and mobility. Exercise is also important for preventing secondary diseases like cardiovascular disease and diabetes.  

Current research shows important benefits from physical activity for people living with MS. It’s been shown to help maintain brain reserve and brain volume. Physical activity can also improve symptoms like fatigue and depression.  

“Is there a diet that can help my MS?” is a frequent question from people living with MS. While there’s no diet that’s been shown to be effective, experts recommend that a balanced diet supports the overall health of the immune system. Popular choices include the Canada Food Guide recommendations and the Mediterranean diet. These include a variety of fruits and vegetables, whole grains like oats and brown rice, healthy fats from olive oil, fish and seafood, nuts and seeds, beans and lentils, some dairy like yogurt and cheese, less red meat, and herbs and spices for flavour. 

In recent years, the gut microbiome and its links to the immune system have been a focus of MS research, and offer hope that we’ll soon know more about using diet to support the immune system in MS. 

People living with MS are up to three times more likely to have sleep disorders compared to the general population, so it’s important to develop good sleep habits. Some healthy sleep habits include: 
 
• Maintaining a consistent sleep schedule 
• Creating a restful environment  
• Avoiding caffeine  
• Cutting out screen time for at least an hour before bedtime  

Make sure to speak to your healthcare team about MS-related factors affecting your sleep. 

 MS healthcare team 

How often a person meets with their MS healthcare team depends on their specific situation. People who are taking certain MS medications will need to have regular blood work and other treatment monitoring tests. Regular appointments with family doctors or nurse practitioners should continue as usual for routine check-ups and screenings. 

 Physical activity 

Research shows that exercise is beneficial for people living with MS and is an important aspect of the overall management of the disease. Exercise improves overall health, increases aerobic capacity and strength, reduces fatigue, and can improve mobility, and mood. Stretching exercises can be helpful to reduce stiffness and increase mobility.  

The Canadian Society for Exercise Physiology (CSEP) released the Canadian Physical Activity Guidelines for Adults with MS to provide the minimum frequency, intensity, duration, and type of physical activity necessary for improved fitness. The guidelines recommend at least 30 minutes of moderate aerobic activity (like walking or cycling) twice a week and strength training exercises for major muscle groups twice a week. 

 Physiotherapy (PT) 

Physiotherapy may play an important role in managing MS throughout the disease course. A physiotherapist will evaluate a person’s movement and functioning, including strength, mobility, balance, posture, fatigue, and pain management. Physiotherapy may be helpful after relapses to help people return to their level of function before the relapse, as well as in progressive MS, to maintain function. Some people may benefit from massage, chiropractic care or acupuncture.  

 Occupational therapy (OT) 

The goal of OT is to enhance independence, productivity, and safety in all activities related to personal care, employment, and leisure activities. Occupational therapists provide training in energy conservation techniques and the use of adaptive tools and devices to simplify tasks at home and in the workplace. They can recommend modifications to the home and workplace to ensure safety, accessibility and convenience. 

 Assistive devices and equipment  

Assistive devices, like mobility aids and other equipment, can provide people with freedom, independence, and security. Assistive devices may be used occasionally or every day, depending on the situation. An occupational therapist can help identify what type of mobility aid will best meet a person’s lifestyle and personal preference. Mobility aids vary and can be for the home, vehicle, workplace, and social and recreational activities. 

 Vitamin D 

Vitamin D deficiency is common in Canada and countries like it with long dark winters. It may be a contributing factor in the development of MS and other chronic diseases. Canadians at risk of developing MS (a person with a sibling, parent, or child with MS) and those living with MS should follow Health Canada recommendations for daily vitamin D. Your doctor may recommend taking a vitamin D supplement above what is recommended by Health Canada. 

Vitamin D supplements should not be taken instead of a disease-modifying therapy. It can be taken safely in combination with a disease-modifying therapy. Consult your healthcare provider before starting any new medication or supplement. MS may increase the risk of falls, and bone fractures. Adequate vitamin D supports bone and immune system health. 

 Complementary and alternative medicine 

Complementary and alternative medicine is a term used to describe different approaches like natural health products, herbs, homeopathic medicine, acupuncture, massage, meditation, and spirituality. Many people use some form of complementary or alternative medicine as part of managing their MS to support their overall wellness. A practice is generally considered complementary if a person uses it in addition to taking other medications or therapies. It’s considered alternative if a person uses this healthcare approach exclusively. Some herbs and homeopathic medications may interact with prescription medications, so it’s important to discuss supplements with your MS healthcare team before starting them. 

Employment and education  

It’s natural to wonder how MS might affect your ability to work or study. Most people with MS lead the same lives they did before their diagnosis. Medications that help manage MS and its symptoms help many people stay in the workplace and at school. When MS affects someone’s job or academic performance, they have a right to ask for accommodation. 

 Accommodation refers to any change in the work (or academic) environment that gives a person an equal opportunity to accomplish their job or education. For example, if fatigue is limiting your performance, you may want to talk about options with your employer. It’s helpful to be prepared with some possible solutions. In the example of fatigue, flex time, or perhaps some work from home may be an option.  

In the workplace, people are not legally required to disclose their diagnosis or to discuss their medical condition with an employer. Some occupations may require a medical exam as a condition of employment. In this situation, you may need to disclose your diagnosis. The only question an employer can legally ask an employee about a health condition is if it relates to their ability to perform the essential duties of the job.  

People who need workplace accommodation may also need to disclose their diagnosis. Government income support programs and benefits may be available to you if you must leave the workforce, however, it’s encouraged to learn about the eligibility criteria for disability and health benefits as well as review your personal and family finances before making any decisions. Connect with an MS Navigator for resources to help with your decision making, including information about disclosing your diagnosis.   

Family and social support

Talking to family members and friends about MS can be difficult. Sharing a diagnosis of MS is a personal decision. Each person within a family or social network will have a different way of relating and coping with a diagnosis of MS. Many people find it helpful to speak with others who have been through similar experiences.  

We help bring people affected by MS together, through various programs and services. Support is available to people diagnosed with MS, their family members, caregivers, and other loved ones. Talking to children about MS may require a different approach compared with speaking to adults about the disease. Some parents find it helpful to position the discussion in a way that reflects their child’s personality, age, and maturity level. Whether it’s a younger child or a teenager, keeping open communication, and encouraging questions and sharing feelings may lessen any concerns children may have, and will help families adapt to life with MS.  

Mental health supports 

Along with managing mood changes with treatment options like medications, talk therapy, or physical activity, developing a strong support network can also help following an MS diagnosis. There are many resources and services available to people affected by MS. Talk to your healthcare team and reach out to an MS Navigator about what support resources are available. Some examples of community resources include personal support workers, mental health services, dietitians, occupational therapists, physiotherapists, social organizations, income support, government services and programs. 

Despite decades of research, the specific cause of MS is still unknown. The best current evidence suggests that MS results from a complex mix of environmental, lifestyle, and genetic factors. Studies that we’ve funded are looking at risk factors, including gender, age, family history, and lifestyle habits that may impact a person’s susceptibility to MS. 

Immunologic 

MS involves an abnormal immune response directed against the central nervous system (CNS). The exact antigen (something the body sees as harmful) or target triggering MS is still unknown. In recent years, researchers have been able to identify which immune cells start the attack, some of the factors that cause them to attack, and some of the sites, or receptors, on the attacking cells that appear to be attracted to the myelin to begin the destructive process.  

Environmental  

Environmental factors are the things that we are exposed to in our surroundings. Some we can control, like exposure to bacteria and viruses in the community, and others we cannot, like climate. Studies suggest that moving from a high-risk area to a low-risk area before age 15 may lower the risk of developing MS risk, suggesting that early exposure to certain environmental factors may influence the likelihood of developing MS later in life. 

Infectious agent 

Researchers have looked at over a dozen viruses and bacteria to see if they play a role in MS. The strongest evidence points to the Epstein-Barr Virus (EBV), which causes mononucleosis, and is a common infection in teenagers. Most people have been exposed to the virus at some point, even if they don’t develop symptoms. Research shows that people who contract infectious mononucleosis (caused by EBV) during childhood or adolescence have a 2 to 3 times greater risk of developing MS later in life. Another virus being studied is human herpesvirus 6-A (HHV-6A), which can stay inactive in the body. People with MS have higher levels of HHV-6A proteins in their blood. Researchers believe there may be more than one virus involved in causing MS. 

Lifestyle  

Childhood and adolescent obesity, and low vitamin D levels early in life may contribute to a raised risk for developing MS. Smoking has been linked to MS risk, with second-hand smoke affecting children and active smoking impacting adults.  

Genetic 

The general population has approximately a 0.25% risk of developing MS. This is about 1 in 400 people. Having a blood relative can raise this risk. 

First-degree relatives of someone with MS, which includes parents, siblings, or children, have around 3-5%, which is 15-25 times higher than the general population but still only 3 to 5 in 100 people.

Identical twins carry a risk of about 25-30%, or 20 to 30 in 100, indicating a genetic role in the disease. Over 200 genes are believed to contribute to MS. However, there are other factors, beyond genetics, that also play a role in its development.

Second-degree relatives, including aunts, uncles, grandparents, etc., have a lower risk compared to first-degree relatives but are still a bit higher than in the general population. While these risk differences are statistically significant, the overall risk of MS occurring again in a family is relatively low.