Samantha Salvaggio learned she had relapsing-remitting multiple sclerosis (RRMS) in 2005, when she was a 19-year-old sophomore at Ohio State University. Over the next 16 years, she averaged one relapse a year.
Each relapse brought symptoms like blurry vision, weakness, numbness, and tremors. But once it ended, things pretty much went back to normal. In the summer of 2021, when another relapse hit, Salvaggio assumed that her symptoms would finally go away. They didn't.
"Not only did I not return to baseline, but I accumulated more issues," she says. The following year, symptoms that had once come and gone started appearing more frequently and felt more severe. Her weakness and thinking ability got worse. She struggled with balance and coordination.
"It felt like, 'This is different. This doesn't feel like relapsing-remitting MS,'" she says.
Her condition seemed to have changed, but she didn't understand how or why. "It felt like I was in this weird gray space," she recalls. In January 2023, after 18 months of monitoring her worsening symptoms, Salvaggio's neurologist confirmed that her RRMS had advanced to secondary progressive MS (SPMS).
Signs That RRMS Has Progressed to SPMS
Most people with MS — about 85% — start with the relapsing-remitting type. About half of them go on to develop SPMS within 5-30 years.
Thanks to new disease-modifying therapies (DMTs), the odds of MS getting worse are lower, but it still happens. When RRMS transitions to SPMS, relapses and remissions switch over to a steady disease progression.
"In relapsing-remitting MS, symptoms tend to come and go in flare-ups or relapses, with periods of recovery in between," explains Elijah Lackey, MD, a neurologist and MS specialist at Advanced Neurology Colorado in Fort Collins, Colorado. "When MS begins to transition to secondary progressive MS, you may notice a gradual worsening of symptoms even when you aren't having relapses."
In SPMS, certain symptoms become more noticeable and severe, such as:
- Trouble with walking, balance, and coordination
- Weakness
- Stiff muscles
- Vision problems, such as double vision
- Trouble thinking and remembering
- Bowel and bladder issues
How Doctors Confirm an SPMS Diagnosis
There isn't a single test or imaging scan that can diagnose SPMS. And because some people with SPMS continue to have relapses (called active SPMS), it can be hard to tell RRMS and SPMS apart.
"It's really about looking at the big picture over time," Lackey says. At each visit, the doctor will ask about your symptoms and examine you to see how your strength, balance, and movement have changed.
Neurologists also use tools like the Timed 25-Foot Walk test — which checks walking ability — to diagnose SPMS. MRI can detect any new lesions or changes in the brain and spinal cord.
"It takes months of observation to accurately confirm the transition," Lackey says.
Treatment Changes with SPMS
Treatment goals for SPMS are different from those for RRMS. "In the relapsing phase, we're primarily working to prevent relapses and reduce inflammation," Lackey says. "Once the disease becomes progressive, we still want to slow its course, but we also put more emphasis on managing symptoms and maintaining your independence."
Some of the same disease-modifying therapies (DMTs) that treat RRMS also help slow SPMS, prevent new nerve damage, and ease symptoms.
SPMS treatments include:
- Cladribine (Mavenclad)
- Diroximel fumarate (Vumerity)
- Glatiramer acetate (Copaxone)
- Interferon beta-1a (Rebif)
- Interferon beta-1b (Betaseron)
- Ocrelizumab (Ocrevus)
- Ofatumumab (Kesimpta)
- Siponimod (Mayzent)
- Teriflunomide (Aubagio)
Finding a medicine that effectively manages your SPMS can take some trial and error. Salvaggio estimates that she's been on 12 different MS drugs since her first diagnosis. Many of them either didn't control her relapses or caused side effects she couldn't tolerate.
While Salvaggio and her neurologist are still trying to find a treatment plan that works, she remains hopeful. "I'm really looking forward to all the new research and medicine options coming out that are more geared toward secondary progressive MS," she says. "I'm hoping something like that will help limit the progression."
Other Ways to Manage SPMS
Medication is only one part of an SPMS treatment plan. Lifestyle changes may also help you feel better. "Eating a balanced diet rich in whole foods and staying hydrated can reduce inflammation and improve overall health," Lackey says.
The Mediterranean diet or the newer MIND diet, which combines elements of the Mediterranean and Dietary Approaches to Stop Hypertension (DASH) diets, can be a good one to follow, according to Lackey. Research shows that people with MS who follow the MIND diet have less tiredness and inflammation, and a better quality of life.
Fitness is the other part of the treatment equation. Low- to moderate-intensity exercises, such as swimming, yoga, and walking, keep muscles strong and joints flexible. Regular exercise will give you more energy and make you feel less tired, even if you may not be able to work out at the same intensity as you did before SPMS.
Salvaggio had to adapt her workouts to fit her disease. "Instead of doing 20 pull-ups in a row, I'm now doing rows with a TRX or with dumbbells," she says. "If it's a bad day and I'm stuck on the couch, I may do leg lifts sitting on the couch. I still try to move my body, even if it means that I'm not doing an actual workout."
While being active is important, so is setting aside time in your day for rest breaks to save energy. And because MS raises the risk for depression and anxiety, get help from a counselor or join a support group if you ever feel like you're struggling.
Life After an SPMS Diagnosis
It's never easy to learn that your MS has changed into a form that will slowly worsen over time. After living with RRMS for nearly two decades, Salvaggio, now 39 and a chronic illness guide and certified patient leader, has learned to find the positive in her situation. She focuses on the things she can control and lets go of the things she can't. "Acceptance is really important," she says.
Life with a chronic condition like SPMS, though challenging, can have a silver lining. It forces you to live in the moment and find joy in the little things. "How I feel from hour to hour changes so much that I just have to be present, pay attention more, and be grateful for what I can do," Salvaggio says.
