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Multiple sclerosis (MS) has different disease courses, each with its own pattern of progression. Secondary progressive MS (SPMS) is diagnosed when people with relapsing-remitting MS (RRMS) transition to a more steady disease progression.
There aren’t specific symptoms that point doctors to an SPMS diagnosis. Instead, neurologists will review the pattern of symptom changes and severity you experience over time to determine if you’ve progressed to this type of MS. This may include differences in flare severity, how often symptoms affect you, or their effect on your quality of life.
SPMS symptoms will affect everyone with the condition differently. “I was diagnosed with secondary progressive MS about a year ago,” one MyMSTeam member wrote. “My worst symptoms are irregular balance and sometimes walking (gait) issues.”
Another member said, “I have SPMS. Right now, I’m progressing with cognitive problems.”
Secondary progressive MS can only be diagnosed in a person who has previously had relapsing-remitting MS, whether or not their RRMS was formally diagnosed. SPMS represents a phase of disease progression where symptoms gradually worsen, often leading to increased disability or worsening cognitive functioning (such as difficulties with memory, concentration, or problem-solving abilities).
As their names suggest, primary progressive MS (PPMS) and secondary progressive MS are both progressive types of multiple sclerosis. SPMS develops in people who have previously had relapsing-remitting MS. People with PPMS experience progressive MS from the beginning, without ever having had any periods of remission.
Relapsing-remitting MS is characterized by a series of relapses (periods of new or worsening symptoms) or followed by periods of remission, when symptoms improve or disappear. Sometimes this pattern of relapse and remission gives way to a more steadily progressing form of the disease, SPMS. SPMS is characterized by a steady worsening of neurologic function and increased disability. However, some individuals with SPMS may still experience occasional relapses or other signs of disease activity, a condition known as “active SPMS.”
Studies on the natural disease course of MS have shown that most people with the condition transition to SPMS eventually. Around 65 percent of people diagnosed with RRMS transition to SPMS within 15 years. However, the use of disease-modifying therapies (DMTs) may slow this progression. Older age at disease onset is linked to a greater risk of transitioning to SPMS.
The symptoms of SPMS vary from person to person and depend on which parts of the central nervous system (CNS) are affected. MS symptoms can be grouped into broad categories:
“My symptoms are mainly pain, numbness, and loss of use of my right hand, zero balance, and optic neuritis,” one MyMSTeam member wrote.
The transition from RRMS to SPMS may be gradual or rapid. Each case of MS, regardless of phase or type, is unique. No two people are the same. Even for experienced doctors, identifying the transition to SPMS can be difficult.
Your doctor will review your symptoms and evaluate whether they’ve progressed before making an SPMS diagnosis. They may ask about details of the following symptoms, as well as others, while determining whether you may have progressed to SPMS.
One of the most common symptoms experienced by people progressing to SPMS is decreased endurance. In a 2023 study of 87 people with SPMS, researchers found that nearly 92 percent experienced lower endurance than in the past or were unable to walk the same distances they used to. “I can no longer even walk to the mailbox without getting exhausted,” one MyMSTeam member wrote. “My endurance used to be so much better.”
Your endurance may decline if your muscles stop receiving impulses due to damage to nerve fibers along your brain and spinal cord.
Motor weakness in the lower limbs is another common symptom among people progressing to SPMS. The 2023 study found that about two-thirds of participants who experienced lower-limb weakness felt it primarily in their hips and thighs, an area known as the proximal region. Some people describe this sensation as feeling like a heavy bag of sand attached to their legs.
“My legs will be working fine, then they melt like a stick of butter in a hot fry pan. I find myself on the ground with no warning,” one MyMSTeam member wrote.
Issues affecting the bowels, urinary tract, or genital areas are common among people with SPMS. Symptoms like constipation, diarrhea, incontinence, bladder problems, and others may occur prior to an SPMS diagnosis, but they’re likely to worsen as you progress toward SPMS. These issues may be due to weakness in the sphincter muscles, which relax or tighten to control how and when waste is able to leave the body.
“I shouldn’t be incontinent at 32,” wrote one MyMSTeam member. Another wrote, “It’s so frustrating to be incontinent of both the bowel and the bladder also. It’s hard to revolve your life around having to be close to a bathroom.”
The 2023 SPMS found that nearly 52 percent of participants experienced fatigue. Fatigue in MS can affect cognitive functions, affecting your ability to think clearly or remember information, as well as causing physical fatigue that limits daily activities. Many people with MS also experience sleep disruptions due to muscle spasms or pain.
“The fatigue feels like being slammed against a wall,” one MyMSTeam member wrote.
“It feels like someone unscrewed the top of my head and poured concrete inside,” another said.
Sensory issues, including numbness and tingling, are common among people with MS. When these symptoms worsen gradually over time, independent of new attacks, it may indicate progression to SPMS. The 2023 study found that more than one-third of participants with secondary progressive MS had sensory problems. These issues may also include pain, which typically affects the face, legs, arms, or trunk. Pain can come from a variety of sources, including neuropathic (nerve-related) pain.
“I’ve got sensory issues,” one MyMSTeam member with SPMS wrote. “Numbness in my feet and a sensation of crawling in my head and legs when I am at rest.”
If you notice a decline in upper body strength, your health care provider may consider this as part of their evaluation for potential progression to SPMS. The 2023 study found that about 31 percent of people with SPMS experienced progressive upper limb weakness.
“I have a very weak right arm,” one MyMSTeam member said. Another wrote, “If only both my arms worked!”
Walking and coordination challenges among the most common symptoms of SPMS. These issues can vary from person to person but often involve leg spasticity and drop foot. Spasticity refers to muscle stiffness or tightness that can make walking difficult and increase the risk of falls. Drop foot (difficulty lifting the front part of the foot while walking) can cause the foot to drag, making it harder to clear the ground. The 2023 study found that about 20 percent of people with SPMS dragged one foot while walking.
“I drag both of my feet,” one MyMSTeam member wrote. “I have near falls because of it.” Another said, “As my MS progressed, I was no longer able to walk without assistance.”
Issues with balance commonly affect people with SPMS. One 2019 study found that balance issues and gait problems were the most common symptom among participants with SPMS, affecting more than 88 percent. Balance issues may make you feel dizzy, causing difficulty if you try to stand up or move.
“I am having a bit of trouble with my balance so I had to use my walker to get around,” one MyMSTeam member wrote. “I feel I am doing well for coming up on 19 years with MS.”
As SPMS causes existing multiple sclerosis symptoms to worsen, it often brings cognitive changes. This can include difficulties with remembering, processing information, or learning new things.
“It can be embarrassing to have trouble finding the right word sometimes,” one member wrote about MS-related cognitive issues. Another replied, “Me too. I search for even the simplest words.”
People with RRMS often experience long periods of remission in between MS symptom flares. But when the condition transitions to SPMS, the frequency of relapses may decrease or stop entirely, while disability continues to progress.
If you notice that you no longer have periods where your MS symptoms subside, consider discussing this with your neurology team to determine if you’ve progressed to SPMS.
More than a dozen disease-modifying therapies are approved by the U.S. Food and Drug Administration (FDA) to treat relapsing forms of MS. Some DMTs are also indicated for active SPMS. Health experts agree that DMTs have an impact on MS progression. However, it’s too early to determine the extent to which these types of MS treatment can alter or delay the transition to SPMS.
Each person’s MS prognosis (outlook) is unique. SPMS often affects mobility and physical function, which can lead to varying degrees of disability. Some people with SPMS experience more significant disability than others. Many choose to use mobility aids, such as a wheelchair, cane, walker, or scooter, especially for longer distances. These aids may be used occasionally or regularly, depending on the severity of symptoms.
Working closely with your health care provider is critical to assessing MS progression. Being able to describe the course of your disease helps you and your MS care provider discuss your treatment options and expected outcomes.
If you have MS, communication with your provider should be ongoing and include continued monitoring. Keep your follow-up appointments and undergo recommended testing, like neurological exams and magnetic resonance imaging (MRI) scans to check for new lesions (areas of damage to the CNS).
You can improve communication with your health care team by tracking your symptoms over time. For example, keeping a daily or weekly symptom journal can help you notice subtle changes and provide a clear picture of your progression.
MyMSTeam is the social network for people with multiple sclerosis and their loved ones. On MyMSTeam, more than 216,000 members come together to ask questions, give advice, and share their stories with others who understand life with MS.
Has your MS transitioned to SPMS? How did your symptoms change with the transition? Share your experience in the comments below, or start a conversation by posting on your Activities page.
Chiara Rocchi, M.D.
completed medical school and neurology residency at Polytechnic Marche University in Italy.
Learn more about her here.
Nyaka Mwanza
has worked with large global health nonprofits focused on improving health outcomes for women and children.
Learn more about her here.
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