If you have secondary progressive multiple sclerosis (SPMS), you most likely started out with the relapsing-remitting type (RRMS). The shift to SPMS often happens slowly, and it can be hard to know for sure if your condition has changed.
One way to tell the two MS types apart is that RRMS moves between periods of symptoms called relapses and symptom-free periods called remissions. In SPMS, symptoms and disability gradually increase over time without remissions.
Your doctor will examine you and do tests to find out whether you still have RRMS or you've moved on to SPMS. If you have made the shift to the new stage, a few changes to your treatment plan can help you better manage your symptoms.
Symptoms of SPMS
Your symptoms offer the main clue that your disease has changed. With SPMS, you'll have fewer or no relapses. When you do have a relapse, you may not recover from it as fully as you once did. Instead, your symptoms may gradually get worse over a period of months.
Which symptoms you have depend on what areas of your brain and spinal cord the disease has damaged. The symptoms of SPMS aren't that different from those of RRMS, but they may be more severe.
Here are a few signs that you've developed SPMS:
- More tiredness, numbness, or weakness
- Double vision or other problems with your sight
- Increasing trouble with walking, balance, and coordination
- Bladder and bowel problems
- A harder time thinking, remembering, and concentrating
How Your Doctor Diagnoses SPMS
Once you learn that you have RRMS, your doctor will track your disease to see if your symptoms change.
At regular visits, the doctor will ask how you're feeling. Expect to answer questions like:
- Have you had any new symptoms?
- When did they start?
- Have your symptoms gotten worse or stayed the same?
Usually, doctors diagnose SPMS when your symptoms have steadily gotten worse for at least 6 months.
Tests for SPMS
No single test can confirm that you have SPMS. But your doctor can track the changes in your disease with tests that show how much nerve damage you have.
MRI (magnetic resonance imaging). In MS, the immune system -- your body's defense against germs -- attacks the myelin, the coating that surrounds and protects your nerves. This creates areas of damage called lesions in your brain and spinal cord.
An MRI uses powerful magnets and radio waves to make pictures of your brain and spinal cord. These images show how many lesions you have and where they are. Your doctor can look for these damaged areas to see if your disease has changed or if you have new lesions.
Cerebrospinal fluid (CSF) test. CSF is a clear fluid that bathes and protects your brain and spinal cord. Your doctor will check for certain proteins and other substances in your CSF that can show whether your immune system is causing inflammation. That means your disease is active.
To take a sample of CSF, your doctor will do a lumbar puncture, also called a spinal tap. You'll lie on your side while they place a needle into your lower back below your spinal cord and remove some of the fluid for testing.
Evoked potentials (EP) test. This is a check of your electrical nerves to find out if MS has damaged those that help you see, hear, and feel. Your doctor places electrodes on your scalp to record electrical activity in your brain. They'll do this as you look at a pattern on a video screen, listen to a series of clicks, or get very tiny pulses in your arm or leg.
Optical coherence (OCT scan). This scan takes a 3D image of your eye so your doctor can check your eye health and see what’s going on beneath the surface.
After a Diagnosis
It can take years of watching symptoms for doctors to confirm that your RRMS has turned into SPMS. You can help the process by letting your doctor know if you have any new symptoms or if they get worse.
Once you learn you have SPMS, you and your doctor can discuss changes to your treatment plan to help you manage symptoms.