When you live with multiple sclerosis (MS), every symptom tells a story. But when you’re busy with the day-to-day, you don’t always have time to read the signs.
MS can change over time. That’s why it’s important to pause for a moment and reassess your MS. If you notice changes in your symptoms, don’t keep them to yourself. Talk to your neurologist or MS team.
It’s not always easy to assess changes in your MS. Use the interactive assessment tool to help you keep track.
Know the phases of MS
MS is different for everyone. But for most people it starts with a diagnosis of relapsing remitting MS. Over time MS can change. Some patients can enter a different phase of MS, called secondary progressive MS (SPMS).
Relapsing remitting vs secondary progressive MS
Relapsing remitting MS (RRMS) is the most common form of MS. Around 85% of people are diagnosed with RRMS, usually in their 20s to 40s. If you have RRMS, there are times when you experience a sudden onset of symptoms (relapses), followed by periods of partial or complete recovery (remission).
Secondary progressive MS (SPMS) is a different phase of MS. After you’ve lived with RRMS for a number of years you may notice that the frequency of relapses decreases or even stops altogether, but the level of disability continues to increase over time. This may start to interfere with your day-to-day activities.
Many people with RRMS may go on to develop SPMS. The changes associated with this progression happen gradually. Left unchecked, it can lead to more noticeable symptoms and increased disability. Which is why it’s so important to reassess your MS and talk to your specialist team.
Identifying changes in your MS
Early detection is essential to managing SPMS. Keep a diary of any changes you feel and refer to this when completing the interactive assessment tool. Use your regular reviews to discuss these changes with your specialist team. This helps to determine whether changes are associated with SPMS. Identifying change and working with your specialist team will help you recognise and manage changes earlier.
So how do you know if your MS is changing?
Think back to how you felt 6 months ago.
Compare this to how you feel today.
Recognising the signs
Cognitive changes
Difficulty finding words
or trouble speaking
Worsening
memory
Trouble thinking
quickly or clearly
Physical changes
Difficulty with movement,
balance and walking
Bladder and
bowel problems
Fatigue and feeling
extremely tired
Sexual problems such as erectile
dysfunction, vaginal dryness
or decreased sensation
Talking to your MS specialist team
If you’ve noticed changes in these or any other symptoms, it’s important to talk to your specialist team. Even if the changes seem small, they can help your neurologist assess whether your MS is transitioning into a new phase.
To help you reassess your MS, use the interactive assessment tool below. Sometimes it can be helpful to complete it with someone who knows you well, as they may offer a different perspective.
Once you’ve completed the assessment, take it with you to your next appointment and use it during the conversation with your neurologist and/or MS nurse.
My MS team
Your neurologist and MS healthcare team are an essential part of your support network. Community organisations, such as state-based MS societies, can also provide a range of information, advice and services to help you manage your MS.