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MS symptoms: How to track changes

Living well with Multiple Sclerosis (MS) covers so many different areas, from eating well to exercise, keeping up with the latest scientific advances and making sure you’re able to carry on investing time in those important relationships with family and friends. Yet one of the most important ways of keeping MS under control is being aware of any changes in symptoms, and communicating these to your neurologist or MS nurse. 

Symptom changes can be indicators of MS transitioning to the next phase, often from RRMS (Relapse-Remitting MS) where symptoms intensify and then decrease, to SPMS (Secondary Progressive MS), which involves more consistent and persistent symptoms1.

These different phases of MS generally need different methods of management, so flagging these to your doctor is key to making sure you’re on the right path and able to delay your symptom progression2. Studies have actually shown that the earlier you address your changing symptoms, the better chance you may have of delaying progression. Because MS changes over time moving across different phases taking a “wait and see” approach can make it harder to manage down the road3. 

However, we know that recognizing changes – particularly gradual ones – is often easier said than done. It can feel challenging to begin the habit, but the trick is to find the tracking techniques that work best for you. Then, once you’re in the routine it’s something that can be much easier to manage. 

A few helpful ways of tracking symptom changes are: 

Reflecting on specific points in time

Noticing differences in our bodies is difficult at the best of times, but it can be even more challenging when a flare-based condition is thrown into the mix! Instead of trying to keep track of changes from one day to the next, think back to the past few months and ask yourself if there is anything that you find more difficult now than you had done then. You could use regular markers like family birthdays or healthcare appointments – anything that means brings back clear memories of a specific day
. 
Think about your relapse patterns

MS progression isn’t just linked to changes in symptoms, it’s about the frequency at which MS flares are experienced4. This is because SPMS involves more consistent and persistent symptoms4, so if you’re noticing that symptoms are more intense but that flares are fewer, it’s important to communicate that to your doctor.

Think about mental changes as well as physical ones

MS symptom changes aren’t just about physical signs, they’re about cognitive ones too. Memory loss or finding it tricky to keep to a train of thought can often be signs that you’re transitioning to a different phase of MS5, so make sure you’re tracking these symptoms as well as your physical health. 

Prepare for your appointment

It’s difficult to give a truly accurate picture of any symptom changes when you’re on the spot in a consultation with your neurologist or MS nurse, so it’s really important to prepare for these appointments in advance and arrive with a summary of any cognitive or physical changes that you’ve noticed since your last appointment.
 
We’ve created a handy tool to help you keep track of changes. Print out a copy and complete it before your next consultation, ready to discuss with your physician. This way, you can spot any signs of change and start managing progression as early as possible.

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