If you have relapsing-remitting MS, you’re likely to eventually be told, ‘You have secondary-progressive MS.’

By Quinn PhillipsMedically Reviewed by Jason Paul Chua, MD, PhD

Reviewed: May 31, 2023

If you’ve recently been diagnosed with multiple sclerosis (MS), chances are you have the relapsing-remitting form of the disease (often abbreviated as RRMS). This form of MS is characterized by periods of worsened symptoms — known as relapses — that develop over days or weeks, and usually subside partially or completely.

MS relapses are usually followed by periods of remission, or “quiet periods,” that can last for months or even years.

In most people with RRMS, this pattern of relapses and remission eventually changes into a steady progression of symptoms, known as secondary-progressive MS (SPMS).

SPMS can either be categorized as active (with relapses and/or new MRI activity) or not active, notes the National Multiple Sclerosis Society (NMSS). It can also occur with progression (evidence of worsening disability over time, with or without relapses or new MRI activity) or without progression.

At least 20 percent to 40 percent of people with RRMS develop SPMS, according to the Mayo Clinic. This transition usually occurs in people who have had RRMS for at least 10 years, per the NMSS.

For many people with MS, the word “progression” has scary connotations — conjuring up images of a rapid, debilitating decline in neurological function. And, in fact, this is how some people experience secondary-progressive MS.

But for many others, the worsening of symptoms that comes with SPMS is manageable, and doesn’t necessarily have a dramatic impact on their quality of life.

Here’s an overview of what happens in SPMS, and what you might experience if you develop it.

A Symptom-Based Diagnosis

Like other forms of MS — including RRMS and primary-progressive MS, in which symptoms worsen right away without relapses — SPMS is defined by a pattern of symptoms, rather than by diagnostic tests.

“There’s no MRI [magnetic resonance imaging] or blood test that we use to diagnose secondary-progressive MS. It’s the patient’s disease course,” says Jai S. Perumal, MD, an associate professor of clinical neurology at Weill Cornell Medicine in New York City.

The most common early indicators of SPMS, Dr. Perumal says, are progressive problems with gait (walking), or loss of stamina, or difficulty with cognition.

“Things are kind of creeping in, and they’re there to stay,” she says. “They don’t come in all of a sudden, the way a relapse happens.”

This gradual onset of symptoms means that it can be difficult to pinpoint when, exactly, SPMS begins. Perumal notes that if a doctor has been seeing a patient for some time, it may be easier to notice when symptoms begin to worsen subtly — but any doctor can listen to a patient’s perception of how symptoms have changed over the years.

There’s no usual point in time when SPMS begins, says Perumal, but it often comes sooner in people with aggressive disease — meaning that they experience severe symptoms during relapses, or have them more often.

In contrast, if someone has mild disease, “You may not even notice the transition that much,” says Perumal — and, in fact, people with milder MS can be stable for years without relapses or significant worsening of symptoms.

But Perumal cautions against complacency during periods of symptom stability. “Things will still be happening on the MRI,” she says. “Not every lesion translates into symptoms.” This means that it’s still important to continue with your prescribed treatment.

For Ardra: A Blurry Transition From RRMS to SPMS

The transition from RRMS to SPMS has been blurry for Ardra Shephard, a resident of Toronto, who was diagnosed with MS in her early twenties. She comments on living with MS in her blog, Tripping on Air.

“It’s not like they give you some kind of certificate,” she says. “It’s more of an observation you can only make after the fact.”

For Shephard, early MS symptoms included vision loss, hearing loss, numbness, and paralysis — dramatic changes that would come on suddenly during relapses. It took weeks or even months to recover from these attacks, after which she still wasn’t quite “normal.”

“Every time there was a new attack, I’d be left with a little more damage,” she says. This included vision that mostly returned, but not to the point where she could drive a car, and walking that seemed normal until she hit a certain distance, after which her foot would start to drop.

After a certain amount of time, “You look and see that you’re not having the same kind of relapses, there are no new MRI lesions, but there are certain symptoms that are gradually getting worse,” Shephard says of her gradual change to SPMS.

For Doug: A Steady Decline From Day 1

The onset of SPMS was very different for Doug Ankerman, an Ohio resident who was diagnosed with MS in 1996 and worked as a broadcast advertising copywriter until 2009. A former stand-up comedian, he tries to inject humor into his MS experiences in his blog, My Odd Sock.

“I’ve been on a steady decline, I think, since pretty much day one,” Ankerman says, though he recently feels he has stabilized.

“Thinking back, I may have had maybe one relapse, and I did a couple of courses of steroids,” he says.

Ankerman experiences problems with his gait as well as spasticity, for which he takes the drug baclofen every day and receives Botox (onabotulinumtoxinA) injections in his legs every three months.

He’s been on and off disease-modifying therapies (DMTs) for MS over the years, and has seen his symptoms worsen regardless of what, if anything, he was taking.

In addition to seeing his progression in timed walking tests at his doctor’s office, “I can tell it in my everyday life with my balance,” he says. “Some days, I have to stop walking up and down my driveway. I think, ‘Gee, I could do this six months ago.’”

But Ankerman says he works hard at fighting his MS with daily exercise and stretching several times a day.

“‘Move it or lose it’ is an often-used adage but is so true — especially with MS,” he says.

Developing Treatment Strategies for SPMS

The disease mechanism underlying the change from RRMS to SPMS isn’t well understood, according to Perumal.

In RRMS, it appears that circulating inflammatory cells cross the blood-brain barrier and attack neurons, leading to lesions and relapses. Perumal notes that according to the latest research, SPMS may result from inflammatory cells that have settled in the brain, or from the loss of neurons over time.

“If they took a lot of hits early on in the disease, that kind of neuronal loss is going to be more pronounced,” she says.

Right now, there aren’t any effective treatments to repair or replace damaged or lost neurons in MS. This means it’s especially important to try to control the disease in its earlier stages, when the currently available drugs are most effective, Perumal says.

“If we preserve neurons or prevent them from getting under these repeated attacks, then maybe when patients hit the secondary-progressive stage, it’s not going to be as bad as it could have been,” she says.

Once a person is firmly in the secondary-progressive stage, it’s standard practice to continue their MS treatments and to switch to a more aggressive therapy if symptoms get worse, Perumal says. This might help limit new inflammation or lesions, but it won’t reverse long-standing damage or the associated symptoms.

Disease-modifying therapies (DMTs) effectively slow the progression of disability caused by MS and reduce the frequency and severity of acute attacks in people who have RRMS and active SPMS. They also reduce the development of new lesions. DMTs may also alter or delay the transition to SPMS, but it’s too soon to tell, adds the NMSS.

Mitoxantrone (Novantrone) was the first drug approved for use in people with SPMS. But since 2019, several more medications have been approved for active SPMS.

Symptoms Are Treatable, Even When Underlying Disease Isn’t

Even if you’ve been diagnosed with SPMS, you don’t have to accept living with all your symptoms, Perumal emphasizes. 

“There are many medications that help with gait, that help spasticity, that help with bladder symptoms,” she says. “You should still talk to your doctor about your symptoms.”

To make the most of appointments when you have SPMS, Perumal recommends making a list of topics to discuss, starting with symptoms that are bothering you the most.

This is a nod to the truth that the treatment of MS symptoms, rather than the underlying disease, involves a piecemeal approach.

When someone has multiple symptoms, “We can’t do something for all these things at one visit,” Perumal notes. “It’s trial and error, and it’s a step-by-step process.”

Secondary-Progressive MS: What Is It, and When Does It Start? | Everyday Health