When you're first diagnosed with the relapsing-remitting form of multiple sclerosis (RRMS), you'll have attacks of symptoms that show up for a few days or weeks. These are called relapses. Then you'll have periods where your symptoms improve or go away, called remissions. As the disease progresses, your symptoms will gradually get worse without any relapses or remissions in between.
Timing is everything when it comes to MS treatment. The sooner you start, the better you'll be able to cut the number of relapses and protect your brain and spinal cord from MS damage.
Treatment also helps once you move into the secondary progressive form of the disease (SPMS). Even in this later stage it's possible to change the course of the disease. New medicines for SPMS can help slow damage and prevent disability.
It's important to track your symptoms so you know when your MS progresses. The transition to SPMS can be a gradual process. You'll need to stay alert for any subtle changes in your disease so you can report them to your doctor.
How to Know When Your MS Changes
The symptoms of SPMS can be hard to tell apart from those of RRMS because they're so similar. They can include things like:
- Tiredness
- Numbness or tingling
- Double vision and other problems with your sight
- Trouble walking and coordinating your movements
- Bladder problems, such as an urgent need to go to the bathroom
The difference between SPMS and RRMS is in how long the symptoms last. RRMS symptoms appear during periods of relapses. In between these relapses are remissions, when symptoms improve or go away completely.
When you switch over to SPMS, you might still have flare-ups, but the remissions in between won't be complete. Your symptoms will stay with you and they'll slowly get worse over time.
Keep a Symptom Diary
MS progression can be so slow and subtle that your doctor might not be able to tell when it happens. It may even be hard for you to notice.
Keep a close eye on your symptoms so you can report any changes to your doctor. One easy way to watch for changes is by keeping a symptom diary. You can use a paper diary or an app on your smartphone.
Each day, write in your diary:
- The type of symptom you had
- Whether it's new or you had it before
- What seemed to trigger it, such as heat, stress, or lack of sleep
- What medicines or other treatments improved it
- When it went away, or if it didn't go away
Over time, you and your doctor will be able to see patterns in how often your symptoms appear, when they start, and what triggers them and makes them worse.
At some point you might find that certain activities, like climbing stairs or lifting heavy grocery bags, become harder than they used to be. Or you could notice that a symptom like fatigue gets worse after you've been outside on a hot day. Jot down any changes you're aware of.
What to Do When Your MS Changes
If your MS symptoms seem to be getting worse or you no longer have relapses and remissions, make an appointment with your doctor. They'll need to figure out whether you have progressed to SPMS, or if your symptom is left over from the last relapse.
The doctor will ask about your symptoms and do a neurologic exam. This exam includes a check of your:
- Reflexes
- Coordination and balance
- Walking ability
- Vision, hearing, and other senses
- Strength
An MRI can help show whether your MS has progressed. The test uses strong magnets and radio waves to make pictures of your brain. It can show areas of new disease activity and damage to help your doctor confirm whether you've moved on to SPMS. Once you know whether your MS has progressed, you and your doctor can make a plan to treat it.
