Progressive Multiple Sclerosis

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. 

Some people will experience a steady worsening of disease from the beginning, without relapses or remissions. This is called primary progressive MS (PPMS). Most people with PPMS notice walking and balance problems early on. It’s often diagnosed after age 40 and affects men and women equally. 

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

Diagnosing progressive MS

There’s no single test that can confirm progressive MS. Instead, diagnosis is based on tracking how the disease changes over time, including a detailed history of symptoms based on regular neurological exams.

Magnetic resonance imaging (MRI) and diagnosing and monitoring MS. The MRI can track changes in the central nervous system which may suggest worsening of MS.

Even when symptoms seem stable, changes may still be happening beneath the surface, contributing to progression. Recognizing these changes early can help guide treatment and protect long-term brain health. 

Monitoring MS progression

MRI scans help monitor MS by showing changes in the brain or spinal cord, ruling out other causes of the symptoms you have, and showing signs of disease progression—even if you don’t have any new or noticeable physical changes.

If you notice changes with walking, thinking, or in managing everyday tasks, talk to your healthcare provider. Even small changes like worsened fatigue or cognitive issues can suggest MS progression.  Recognizing changes will help guide the care and support you need. MyRules is an anonymous tool that can help you track changes and talk about them with your neurologist.

Everyone’s experience with MS is unique. Some people with progressive MS notice steady changes over time, while others reach a point where things feel more stable. Taking the steps below can help improve your brain health, help you stay independent, maintain your quality of life, and feel more in control of your future:  

• Start a treatment plan early
• Stay physically and mentally active
• Maintain a balanced diet
• Manage other health issues (comorbidities)
• Work closely with your care team 

Until recently MS progression was understood to have two phases. Early MS was thought to be marked by periods of inflammation causing relapses. Relapses recover completely or partially, leaving some remaining damage to the brain and spinal cord. This is relapsing remitting MS (RRMS). Over time, the inflammatory part of MS becomes less active and is replaced by slow, ongoing damage to the central nervous system. This is known as secondary progressive MS (SPMS).

Researchers have now identified that instead of two separate stages happening one after the other, both processes are happening from the start. Disability happens from relapse associated worsening (RAW). At the same time, progression independent of relapse activity (PIRA) is ongoing. These processes can begin in the early stages of the disease, even before someone is diagnosed and continue throughout the course of the disease.

Some people experience a steady worsening from the beginning, also called primary progressive MS. They don’t have the inflammatory course that is relapsing remitting MS but do have the progression independent of relapse activity (PIRA).

Aging also plays a role in disease progression.  Age-related changes, along with shifts in immune function and slower brain repair, are closely connected and may contribute to disease progression. Other processes are also involved, and researchers are still working to understand how they all fit together.

Most MS medications, called disease-modifying therapies (DMTs), are designed to reduce inflammation and prevent relapses. However, they have limited effect on the nerve damage that comes with progression independent of relapse activity.

Our central nervous system has built in reserve that can make up for the damage that is done. With normal aging this reserve ability becomes less effective, and damage done early in the disease process is revealed. 

Aging can also impact the benefits of DMTs, as older people with MS may be more at risk of having side effects and infections. Because of this, very few DMTs have been tested in clinical trials in older people with MS. They are also not tested in people with other health conditions (comorbidities) which are common as people age. 

Here are some treatment options for people with early PPMS or active SPMS:

• Ocrevus™ (ocrelizumab) is the only disease-modifying therapy (DMT) approved for people with early primary progressive MS (PPMS) who meet specific prescribing criteria. It works by targeting B cells—white blood cells that may contribute to MS-related nerve damage.
• Mayzent® (siponimod) is approved for people with active secondary progressive MS (SPMS), meaning they still experience relapses or show signs of inflammation on MRI. Other approved treatments for active SPMS include interferon beta-1a (Avonex®, Rebif®) and interferon beta-1b (Betaseron®), which help reduce disease activity and slow progression.

If you live with progressive MS and DMTs aren’t an option for you, symptom management, healthy lifestyle choices, and regular check-ins with your care team can help support your quality of life. 

Meanwhile, new therapies aimed at protecting the brain and repairing nerve damage are actively being developed.

There are different ways to manage MS symptoms—including medications and other therapies. Symptom management can help you feel more comfortable and live well. Talk with your doctor about what would work best for you. Read Symptoms of MS for more information.

Managing other health conditions alongside MS (comorbidities) is important for your overall health. Health conditions like high blood pressure or diabetes are common and can worsen MS symptoms or progression if left untreated. Read How Age MS and Other Conditions can Affect Your Health.

Around 80% of people with MS will use wellness practices and complementary therapies—like yoga, acupuncture, massage, mindfulness, or herbal remedies—to ease symptoms such as fatigue, pain, or mood changes. While these don’t treat MS itself, many people feel they help improve quality of life when used along with regular care. Read Wellness Practices and Complimentary Therapies in MS for more information. 

Living with MS means your body is already working hard—so taking care of your overall health can make a difference. Small, steady habits can help you feel better day to day and may even help slow the progression of the disease.

Mood Changes

Depression and anxiety are more common in people with MS than in the general population. Recognizing and managing mental health is an important part of living well with MS. Read here for more about mood changes and MS.

Sleep Matters

Getting enough good-quality sleep is essential. Poor sleep can make fatigue, mood, and cognition feel worse. If you’re having trouble sleeping, talk to your healthcare team. Keeping a regular routine, avoiding caffeine and other stimulants, managing stress, and cutting back on screen time before bed can help you sleep better.

Nutrition

There’s no special “MS diet,” but eating healthy supports your brain and body. Following Canada’s Food Guide is a great place to start. Read more about how nutrition can support people living with MS. 

Physical Activity

Regular physical activity improves strength, mobility, flexibility, and quality of life, while also supporting mental well-being and reducing the risk of other conditions like heart disease and diabetes. Read more about how physical activity can support people living with MS.  

Maintain a Healthy Weight

Obesity has been linked to faster MS progression, especially when combined with smoking. Keeping a healthy weight may help slow down disability and support better treatment outcomes. 

Quit Smoking 

Smoking speeds up MS progression. Quitting is one of the best things you can do for your health. 

Asking for Help is a Strength

Everyone needs help sometimes. If you're living with MS, support from friends, family, your primary care provider, or a therapist can make a big difference. People often want to help, but they may not know what you need—so it can really help to let them know. Maybe you want help with groceries now and then. Or maybe you’d rather try something on your own before asking for help. Asking for help gives you more time and energy to focus on what matters most to you.

Connecting with Others

Talking to other people with MS can be a big source of support. Joining a support group connects you with people who understand what you're going through. You might learn new tips, share advice, or just feel less alone. Check out our support programs.

MS and Family Life

MS is a disease that affects the whole family. Everyone reacts differently, and not everyone copes the same way or at the same pace. That’s okay. It might take effort to adjust and communicate openly, but it’s worth it. There are helpful resources and publications to guide families, caregivers, and even children in understanding and coping with MS.

Living with MS means thinking about the future—even if it feels overwhelming at times. You might wonder how your MS will progress, what your income or insurance options will be, or whether you'll be able to stay in your home. These questions are tough, especially after a new diagnosis, but thinking them through early can help you feel more in control.

Planning for "what ifs" doesn’t mean you’re expecting the worst, it just helps to be prepared and gives some peace of mind to you and your loved ones. You may never need those backup plans but having them in place can be a big relief.