Nonrelapsing Secondary Progressive MS (nrSPMS)

Nonrelapsing secondary progressive MS (nrSPMS) is a type of secondary progressive multiple sclerosis (MS), where symptoms slowly get worse. You don’t have any relapses. A relapse is when symptoms suddenly show up and get worse (flare up) after a time when you were feeling better.

Secondary progressive MS is a stage that can occur after relapsing-remitting MS (RRMS). During RRMS, symptoms flare up and then go away. Symptoms don’t flare up anymore in nrSPMS.

A new treatment may help slow down MS symptoms. But it won’t completely stop the disease from getting worse. Your care team can help you manage symptoms as they happen.

Symptoms of nrSPMS

Symptoms of nonrelapsing secondary progressive MS are similar to those you may have had in earlier stages of MS. The main difference is that they get worse slowly over time instead of coming and going. These symptoms include:

• Feeling very tired
• Muscle stiffness
• Needing to pee or poop suddenly
• Numbness or tingling in your arms and legs
• Problems with walking and keeping your balance
• Trouble thinking clearly, remembering and concentrating
• Vision changes

nrSPMS causes

Researchers don’t know exactly what causes nrSPMS. At first, your immune system attacks the protective cover (myelin) around your nerves by mistake. Over time, the disease changes. Instead of just attacks, the nerves get more and more damaged and stop working as expected. In nrSPMS, this nerve damage may keep getting worse without new attacks.

How doctors diagnose nrSPMS

A provider will ask you about your symptoms and health history. They’ll also do a physical and a neurological exam. They may check how well you walk and balance, if you’re able.

Your provider will want to know more information about your symptoms, like:

• When they started
• If they get worse or better
• How they affect your daily activities

They might order tests, like an MRI, to look for damage in your brain or spinal cord. Tests help your provider see if there are changes over time to different areas of your nervous system.

Diagnosing nrSPMS can take time because the change from RRMS to SPMS happens slowly. Your doctor wants to be sure about the diagnosis so they can give you the best possible treatment.

How is nrSPMS treated?

A new medicine called tolebrutinib might help slow down worsening nonrelapsing secondary progressive MS symptoms. This medicine is a type of disease-modifying therapy (DMT). DMTs help by calming your immune system so it doesn’t keep damaging your nerves.

As providers are still studying this medicine, you might need to get your liver checked often while taking it. This helps make sure the medicine is safe for you and doesn’t cause liver problems. This medication isn’t available to be prescribed at this time.

Along with DMT, your provider might suggest other ways to help you feel and move better:

• Physical therapy: A physical therapist can help you build strength, improve balance and move safely.
• Occupational therapy: An occupational therapist can teach you easier ways to do everyday tasks and show you how to use special tools or devices if you need them.
• Speech therapy: A speech therapist can help with swallowing and speech difficulties.
• Medicines: Other medicines can treat specific symptoms.
• Saving your energy: You can learn how to rest during the day and plan your activities so you don’t get too tired.

When should I see my healthcare provider?

If you notice new or worsening symptoms, let your provider know. You should have regular check-ins with them during treatment to make sure things are working well and you don’t have any side effects.

What can I expect if I have nrSPMS?

With nonrelapsing secondary progressive MS, your symptoms will slowly get worse over time. Treatments can’t cure nrSPMS, but they might help slow it down. Your provider will tell you what to expect and give you the latest information. Everyone’s journey with nrSPMS is a little different.

You may need to use a cane, walker or wheelchair as time goes on. When you might need these is different for everyone. Later, you might need full-time help if it becomes too hard or unsafe to do daily tasks by yourself.

Living with MS can take a toll on your mental health. While it’s important to look out for physical symptoms, taking care of your emotional health is just as important. If you ever feel anxious, depressed or frustrated, it’s normal and OK. Try reaching out to a mental health professional or joining a support group if you need it.