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Multiple sclerosis (MS) doesn’t look the same for everyone. For some people, it starts with flare-ups that come and go (relapsing-remitting MS, or RRMS). Over time, those ups and downs can happen less often, and symptoms may start to slowly get worse. When that shift happens, it’s called secondary progressive MS (SPMS).
There aren’t specific symptoms that point doctors to an SPMS diagnosis. Instead, neurologists look at how your symptoms change over time, including whether they are getting worse and how much they affect your daily life. These changes include how severe your flare-ups are, how often they happen, and how much symptoms affect your daily life.
SPMS symptoms affect everyone 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.” Cognitive problems are difficulties with memory, concentration, and problem-solving.
SPMS can be diagnosed only in someone who previously had RRMS, whether or not their RRMS was formally diagnosed. SPMS is a phase of disease progression when symptoms gradually worsen, often leading to increased disability or worsening cognitive functioning.
As the names suggest, primary progressive MS (PPMS) and SPMS are both progressive types of multiple sclerosis. SPMS develops in people who’ve had RRMS. People with PPMS experience progressive symptoms from the beginning, without earlier periods of remission.
RRMS involves relapses (times when symptoms are new or get worse) followed by remission, when symptoms improve or go away. Sometimes this pattern of relapse and remission gives way to a more steadily progressing form of the disease, SPMS. In SPMS, nerve function steadily gets worse over time, and daily tasks may become harder.
Some people with SPMS may still have occasional relapses or other signs of disease activity, a condition called active SPMS. On the other hand, some people with SPMS slowly get worse without relapses. This is known as nonrelapsing SPMS. Researchers think that smoldering inflammation continues in MS even without relapses, which can make symptoms slowly get worse over time. This concept is known as progression independent of relapses.
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. (Optic neuritis is inflammation of the optic nerve that can cause eye pain and blurred or lost vision.)
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 the following symptoms, along with others, to see whether your MS has 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 damaged 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 mainly in their hips and thighs, an area called 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 frying 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 (loss of bladder or bowel control), and bladder problems may happen before an SPMS diagnosis, but they’re likely to get worse 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 study found that almost 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 have 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 slowly get worse over time, even without new attacks, it may be a sign that MS has progressed to SPMS. The 2023 study found that more than one-third of participants with SPMS had sensory problems. These issues may also include pain, which typically affects the face, legs, arms, or trunk. Pain can have different causes, including neuropathic pain (pain caused by nerve damage).
“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 your upper-body strength slowly getting worse and not improving, your healthcare provider may consider it when checking for signs that MS has progressed 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 are among the most common symptoms of SPMS. These issues can vary from person to person but often involve leg spasticity and drop foot (difficulty lifting the front part of the foot while walking). Spasticity refers to muscle stiffness or tightness that can make walking difficult and increase the risk of falls. Drop foot 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.”
Balance issues commonly affect people with SPMS. One 2019 study found that balance issues and gait problems were the most common symptoms among participants with SPMS, affecting about 88 percent. Balance issues can make you feel dizzy and unsteady when you stand up or move around.
“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 multiple sclerosis symptoms to get worse, 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 have 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 ease up, consider discussing this with your neurology team to see if you’ve progressed to SPMS.
More than a dozen disease-modifying therapies (DMTs) are approved by the U.S. Food and Drug Administration (FDA) to treat relapsing forms of MS. Some DMTs are also used to treat active SPMS. Doctors agree that DMTs can help slow MS progression. However, it’s still too soon to know how much these types of MS treatment can change or delay the shift 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 use a wheelchair, a cane, a walker, or a scooter, especially for longer distances. These aids may be used occasionally or regularly, depending on how severe the symptoms are.
Working closely with your healthcare provider is key to tracking 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).
Tracking your symptoms over time can help you communicate more clearly with your healthcare team. For example, keeping a daily or weekly symptom journal can help you notice subtle changes and provide a clear picture of your progression.
On MyMSTeam, people share their experiences with multiple sclerosis, get advice, and find support from others who understand.
Has your MS transitioned to SPMS? How did your symptoms change with the transition? Let others know in the comments below.
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So What Is The Symptoms Of Primary Progressive. You Haven’t Explained Primary Progressive Rrms To Spms
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