6 Frequently Asked Questions About Inactive Secondary-Progressive MS, Answered

You haven’t had a relapse of multiple sclerosis (MS) symptoms in years, and your last few MRI scans have come back stable. So why is it getting harder to walk around the block or up a flight of stairs?

“We have patients who don’t understand how their MRI scans can be stable, but their symptoms are worse,” says Robert J. Fox, MD, a neurologist at the Mellen Center for Multiple Sclerosis at Cleveland Clinic. “They say, ‘There must be a mistake.’ But there is no mistake. Both [the MRI and the patient] are correct.”

If this sounds confusing, that’s because it is. Inactive SPMS is a complex condition that can leave you with lots of questions. Here, experts provide answers to your top concerns.

Does ‘Inactive’ Mean MS Isn’t Progressing?

Not exactly. Inactive SPMS means the condition has been relatively stable. For example, maybe you haven’t had any relapses in months or years, and your MRI scans haven’t shown any new signs of inflammation. Yet your functioning is slowly getting worse.

This decline happens little by little, says Dr. Fox.

It’s possible. When SPMS is stable, the condition is considered inactive. But if you have a relapse or show signs of inflammation on an MRI scan, the MS is thought to be active again, says Dorlan Kimbrough, MD, a board-certified neurologist at the Duke Health Neurological Disorders Clinic in Durham, North Carolina.

“There might have been a gap of several years between the last time you had an event, but all of a sudden, you’ll have a new relapse, or we can detect activity on an MRI scan,” says Dr. Kimbrough. “And that’s the active component to what otherwise looks like progressive MS.

Your doctor will likely want to continue monitoring you with MRIs. But you may find yourself getting fewer scans as you get older, in part because MRIs only detect inflammation, says Fox.

“Progression is best monitored by the individual, because they know exactly what they can do — like how many flights of stairs they can climb before they have to stop,” says Fox.

Once people notice they’re no longer able to walk as far as they once could, or climb as steep of a hill as they once did, they tend to come into the doctor’s office and report that symptoms are getting worse, he notes.

Tell your doctor about any relapses you experience, as well as any continued, gradual changes in your ability to function, says Fox.

That said, it can be hard to know which symptoms may be related to another issue, especially if you’re older or have comorbidities, such as heart disease.

But you shouldn’t try to figure out the ‘why’ behind your symptoms on your own. “Sometimes there’s an obvious explanation — like you have pain in your knee from a knee replacement,” says Fox. “But if you notice something is off, you should see [your doctor], who can help you figure it out.”

Right now, the only treatments for SPMS are for active forms of the condition or people who have relapses or visible inflammation on an MRI. This type of SPMS can be treated with many of the same disease-modifying therapies you may have taken in the past.

One of the best things you can do is keep any other health conditions you might have, such as depression, diabetes, or heart disease, under control.

While it’s true that SPMS is a complicated disease to treat, there’s reason to stay optimistic. Thanks to treatment breakthroughs, “We have converted relapsing-remitting MS in the majority of patients into a fully manageable disease with treatment,” says Fox. “We’re hoping to do the same with [all forms of] SPMS.”

• If you have secondary progressive multiple sclerosis, you may be experiencing a decline in functioning, even if you haven’t had any recent relapses and your MRI scans have come back stable.
• Even if you have a nonrelapsing form of SPMS, it’s still possible to have relapses. If that happens, SPMS is then considered active.
• Most available medications for SPMS treat the active form of the disease, but a new treatment may be coming down the pike for inactive SPMS. Rehabilitation strategies can also help relieve symptoms and improve your quality of life.