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Is it MS progression?

Are you noticing small changes to how you’re able to do things? Even if your MRI isn't showing changes, changes to your physical and cognitive abilities could still be happening.

Rethinking stability in MS

Brain fog, debilitating fatigue, or balance issues: maybe you’ve mistaken them for signs of aging or a bad day rather than your MS. It’s an easy mistake to make, especially when your MRI isn’t showing changes and your relapses are under control.

Now it’s becoming clear that for MS to be truly stable, relapses, MRI activity and cognitive and physical changes, known as disability progressionA gradual increase or worsening of physical symptoms, cognitive symptoms, and/or 
fatigue over time., must all be under control. 

Illustration of the indicators for multiple sclerosis (MS) progression: MRI activity, disability progression, and relapses

Disability is more than mobility

When people think of MS, many think about physical and mobility issues like using a cane or wheelchair because the impact of these changes can be obvious. But what about changes to memory and focus?

When someone with MS is experiencing more cognitive challenges or debilitating fatigue, it could be a sign of disability progression, and it could mean your MS is changing.

Illustration of a woman pulling a heavy ball and chain representing disability progression

Disability progression

Noticing signs of disability progression

When daily challenges add up over time, it could be a sign of disability progression. Here are a few ways disability progression can affect normal, everyday activities:

Illustration of a woman talking and a man struggling to find the right words to respond

Struggling to find the right words

Illustration of a woman with a sad expression looking down with one arm over her stomach representing bowel and bladder issues

Bowel and bladder issues

Illustration of a man with a low battery symbol next to him, representing a lack of energy

Lacking the energy to do usual activities

An illustration of a man with his hands on his knees beside exercise equipment, representing a lack of energy preventing him from exercising as he used to

Being unable to exercise the way you used to

An illustration of a woman thinking about her to-do list, representing the experience of forgetting whether you've completed a task

Forgetting if you already did something

An illustration of a woman thinking about her to-do list, representing the experience of forgetting whether you've completed a task

Tripping or losing balance unexpectedly


Signs like these can be easy to ignore or attribute to something like aging. But if you catch yourself making changes to how you work, socialize, or perform physical tasks, it could be because of your MS, so it's a good idea to mention them at your next appointment.

 

"I was beginning to make some mistakes at work, this was part of the reason I felt I had to stop."

—Female, United Kingdom

 

Could it be SPMS?

Are you noticing changes to your abilities?

You may also think being able to cope with symptoms means your MS is stable. However, when routine tasks are harder than they used to be, it could be a sign that something else is going on with your MS.

Do you have to park closer to stores or your doctor's office? Or stop work earlier than you used to? Maybe someone close to you has noticed you making changes because of your MS. Maybe it's in the way you think, talk, or walk. It’s important to keep track of all changes.

These changes happen very slowly over a long period of time. Since it may be hard to notice them, it can be helpful to check in with yourself once a season and write down what might be different in your day-to-day life.

Watch this video to see how Anne discovered her MS was changing:

Your commitment to tracking is more important than the frequency

Imagine that you inflated a balloon and took a picture of it throughout the month

A calendar from Day 1 to Day 30 that shows a picture of a balloon each day. At day 1 the balloon is fully inflated, and becomes less inflated each day, up to day 30 where it is very small.

 

If we look at any 2 consecutive pictures, it can be hard to notice a difference.

A picture of a balloon with ‘Day 12’ underneath, next to another picture of a balloon with ‘Day 13’ underneath. The balloons look to be a similar size.

 

But if we look at just the first and last pictures, the change is far more obvious.

What can be done to help address disability progression?

Here are a few things that doctors may recommend to help people living with MS deal with cognitive and physical challenges:

  • Rehab led by a speech, occupational and/or physical therapist

  • Therapy, meditation, mindfulness and/or other mental health practices

  • A healthy diet and regular exercise

  • Support groups that connect you to others with MS

Care partners: What should you do when you see changes?

Caring for someone with MS means you are often the first one to detect changes that they might not notice themselves.

While it may feel awkward to speak up, it's important to have honest conversations about the changes you notice so that your loved one's doctor can better understand if their MS needs are evolving. It can also help you build a stronger relationship with the person you care for.

Consider writing down examples and concerns as you see them to refer back to during conversations. If you're unsure about something you think might have changed, remember that signs of disability progression can be hard to notice.

 

"Somebody living with MS might not notice the cognitive problems or changes in emotions they are experiencing, but care partners are able to pick up on them."

—AM, Chief Mission Officer, Patient Advocacy Group

Learn more about a new development in MS

Explore the 2 processes