If you've been diagnosed with SPMS you may have had relapsing-remitting MS for a decade or more. That's when you may begin to feel a shift in your disease.
The changes are often not easy to recognize. But you may notice that your relapses may not seem to fully go away.
Most people with relapsing-remitting MS -- about 80% -- eventually get secondary progressive MS. The relapses and remissions that used to come and go change into symptoms that steadily get worse. The shift typically begins 15 to 20 years after you’re first diagnosed with MS.
Because multiple sclerosis is such a complex disease, it can be hard to spot the changes that signal SPMS, even for health professionals. Doctors often wait at least 6 months before they diagnose SPMS.
Symptoms of Secondary Progressive MS
Relapsing-remitting MS can be unpredictable, but there’s usually a pattern of clear attacks followed by times of recovery. With SPMS, relapses tend to be less distinct. They may happen less often or not at all. When you do have relapses, recovery is not as complete.
Along with these signs, there are other symptoms that might show you’re shifting to SPMS:
- More weakness and more trouble with coordination
- Stiff, tight leg muscles
- Bowel and bladder problems
- A harder time with fatigue, depression, and problems thinking
Your doctor can only diagnose SPMS by comparing your symptoms over time. So it's important that you tell them about any changes in your symptoms.
It’s not clear why people progress from relapse-remitting to secondary progressive MS.
Some scientists think it may be an aftereffect of nerve injury that happened early in the disease. But they need more research to understand what’s behind the shifts in the disease.
It’s often harder to treat secondary progressive MS than relapsing-remitting MS.
The main type of drugs for MS, called disease-modifying drugs (DMDs), make relapses happen less often and symptoms less severe. For people with SPMS who still have relapses, DMDs can still help. But for those whose symptoms just get gradually worse, the drugs don’t really work.
The disease-modifying drugs cladribine (Mavenclad), mitoxantrone (Novantrone), and siponimod (Mayzent) have been approved to treat SPMS. Mitoxantrone is still mainly works to treat relapses and has serious side effects, including heart problems and leukemia. So there’s a limit to how much people can use it in their lifetimes. It’s usually for people with disease that gets worse quickly when other treatments don't work.
Managing Your Symptoms
Lifestyle changes can also make a difference. Doctors recommend sticking to a healthy diet and trying to keep your weight under control.
Exercise is also good for SPMS and other types of the disease. Try activities that get your heart pumping a bit, like brisk walking or swimming, and those that help you stretch and strengthen your muscles and improve your range of motion. They’ll give you more energy and boost your mood. It's also a good way to control your weight.