Image shows a doctor and patient in consultation

How do I know if I'm transitioning to progressive MS?

A diagnosis of MS comes with a lot of uncertainty about the future, and we know many people worry about whether they are transitioning from relapsing to progressive MS.

Becky Perry, a member of our Research Network, asked Dr Don Mahad, a neurologist from the University of Edinburgh, about his research into tracking MS progression and reducing uncertainty.

No tools to identify progression

As someone with a diagnosis of relapsing MS, I know only too well the uncertainty of not knowing whether or when I might begin transitioning to secondary progressive MS.

We know that not everyone with relapsing MS will go on to develop secondary progressive MS. But Don tells me there are still no tools to reliably identify changes that indicate someone is transitioning. That’s why he’s part of a team working to develop a tool to do just this.

What can changes in walking ability tell us?

“The new system will track how someone’s walking changes over time, giving us a better way to determine when progression has started” says Don.

“So far we’ve tested it in people with stable relapsing MS. We observe their gait before and after 20 minutes of exercise.” Around half of individuals had noticeable changes after exercising. If these exercise-related changes get more obvious over time, it’s a potential sign that someone’s MS may be progression.

“Tracking someone’s results with this tool could help neurologists identify when a person’s MS might be progressing.”

How to talk to your neurologist

Don also stressed that there needs to be greater dialogue between the neurologist and person living with MS about any changes to their MS, however small. Especially because many of us only get to see a neurologist very rarely!

“I have patients who I only see once a year who seem to be doing well. But in reality this often isn’t accurate, because they have begun to notice small changes – like struggling with hand strength, scuffing their feet and taking longer to do things.”

“Things like these can be real predictors of progression, and we need to make sure neurologists are alerted.”

Changing the way we view transition

To help these conversations happen, Don thinks we need to change the way we view transition.

Transition is currently seen by many as a short period that happens right before you get secondary progressive MS. But Don says we need to start viewing transition as a continuous process.

“The transition from relapsing to progressive MS is gradual. There might be progressive-like symptoms that don’t lead to a diagnosis of secondary progressive MS. Being more open about transition will help us neurologists to give our patients the best outcomes.”

This blog first appeared as an article in our Research Matters magazine. To get Research Matters by post please contact supportercare@mssociety.org.uk about subscription. You can also download the full issue for free.