Multiple sclerosis (MS) progresses in different patterns, or disease courses, depending on how it first presents and then develops. Each type of MS has a different disease course. It is common to be diagnosed with one type of MS at first, and later another type if the disease course changes. Secondary progressive MS (SPMS) is diagnosed when people with relapsing-remitting MS (RRMS) transition to a more steady disease progression.
The phrase “secondary progressive” indicates that SPMS can only be diagnosed in a person who has previously had relapsing-remitting MS, whether or not their RRMS was diagnosed. An SPMS diagnosis can only be made retroactively. This means a person must have the signs and symptoms of SPMS for six months to a year to be diagnosed.
The change in diagnosis from RRMS to SPMS is based on evidence of plaques, also called lesions or scar tissue, on the brain or spinal cord. Plaques can only be seen and analyzed via magnetic resonance imaging (MRI). MRI results determine whether a person’s SPMS is:
Based on the Expanded Disability Status Scale (EDSS), SPMS is further described as:
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 any periods of remission.
Relapsing-remitting MS is characterized by a series of flare-ups, or relapses, followed by periods where symptoms cease, also known as remission. 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. Sometimes people diagnosed with SPMS experience relapses, as well as periods of less disease activity.
The symptoms of SPMS vary from person to person. MS symptoms can be grouped into broad categories: motor symptoms, cognitive symptoms, and symptoms that affect other aspects of the body.
Problems with balance and walking are the most common symptoms reported by people with SPMS. In one survey, more than 88 percent of people with SPMS reported balance and gait issues. Balance and gait issues are the second most common symptom for those with RRMS, affecting almost 70 percent.
Symptoms of SPMS depend on which parts of the central nervous system are impacted. “My symptoms are not as bad as most of the people I've met on MyMSTeam who also have SPMS,” shared one MyMSTeam member. “My symptoms are mainly pain, numbness, and loss of use of my right hand, zero balance, and optic neuritis.”
SPMS usually presents as an increase in a person’s MS symptoms. 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 trained doctors, identifying the transition to SPMS can be difficult.
Studies indicate that most people with MS transition to SPMS eventually. Around 50 percent of those diagnosed with RRMS will transition to SPMS within 10 years. Ninety percent of people with RRMS will transition to SPMS within 25 years. Older age at disease onset is linked to a greater risk of transitioning to SPMS.
There are about a dozen disease-modifying therapies (DMTs) approved by the U.S. Food and Drug Administration (FDA) to treat relapsing forms of MS, including for people with SPMS featuring relapses. However, Mavenclad (Cladibrine), Mayzent (Siponimod), and Novantrone (Mitoxantrone) are the only drugs specifically approved to treat SPMS. Experts agree that DMTs have an impact on MS progression. However, it's too soon for hard data on the extent that these medications can alter or delay the transition to SPMS.
Everyone’s MS prognosis is different. Sometimes SPMS will impact mobility and physical function, leading to varying degrees of disability. Some people with SPMS will experience greater disability than others. Data suggests that more than two-thirds of people who transition to SPMS remain able to walk. This includes walking with the use of a cane or a walker. Some people with SPMS choose to use a wheelchair or scooter for long distances. These ability aides may be used sometimes or all the time, depending on the severity of your condition.
Working closely with your provider is critical, regardless of the type of MS you’ve been diagnosed with. 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, your communication with your provider should be ongoing and include continued monitoring. Keep your follow-up appointments and ensure your doctor performs regular testing, like neurological exams and MRI scans. It is recommended that people with MS have an MRI at least once per year.
You can improve communication with your health care team by keeping a close eye on your own symptoms. For instance, you can track your symptoms daily or weekly in a journal to help you notice subtle changes over time. Learn more about how to talk to your doctor about MS.
Getting the news that your MS has transitioned from RRMS to SPMS can be difficult. The fact that there is so much variability in the diagnosis, symptoms, and prognosis of SPMS can be scary. A community of support is more important than ever.
MyMSTeam is a community of people living with MS who offer each other guidance, education, and support. In fact, there are more than 8,600 people with SPMS on MyMSTeam.
Have you noticed a change in your MS symptoms? Has your MS transitioned? Did you recently make a change to your MS treatment as a result of your SPMS diagnosis? Leave a comment below or join a conversation on MyMSTeam today.