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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 significant relationships with family and friends. Yet one of the most important ways of keeping MS under control is being aware of any changes in your symptoms, and communicating these to your neurologist or MS nurse.

Subtle worsening in the type, severity and frequency of symptoms, whether visible or invisible, physical or cognitive, can be signs of MS progression1,2. If you have been diagnosed with RRMS (relapsing remitting MS), you may experience patterns of new or worsening of old symptoms, often lasting more than 24 hours3. With time, your condition may eventually progress to SPMS (secondary progressive MS), which involves more consistent and persistent symptoms4.

RRMS and SPMS generally may require different methods of management, so it is important to look out for any signs of worsening symptoms and flag these with your neurologist or MS nurse5. As MS changes over time, taking a "wait and see" approach can make it harder to manage at a later point in time6.

However, we know that recognising 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 ways of tracking symptom changes you may find helpful, are:
    
Reflect on specific points in time

Noticing changes 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 a specific point in time in the past few months and ask yourself if there is anything that you find more difficult now than you had done then. Don’t forget to use your Instagram or Facebook profiles to look back at things. You could use regular markers like family birthdays, Christmas or specific shopping trips – anything that 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 with which MS flare-ups are experienced7,8. This is because SPMS involves more consistent and persistent symptoms4, so if you’re noticing that symptoms are more intense but that flare-ups are fewer, it’s important to communicate this to your MS specialist, neurologist or MS nurse.

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 MS9, so make sure you’re also tracking these symptoms as well as physical ones.

Prepare for your appointment

It can be difficult to give a truly accurate picture of any symptom changes when you’re put on the spot in a consultation with your MS specialist, neurologist or MS nurse, so it’s really important to prepare for these appointments in advance. Arrive with a summary of any cognitive or physical changes that you’ve noticed since your last appointment1.

There are several different ways of monitoring your MS, from apps to paper documents.
It is important to find one that works best for you.

 

References:

  1. MS Trust. Making the most of appointments. Available at: https://www.mstrust.org.uk/about-ms/newly-diagnosed/making-most-appointments. Accessed April 2020.
  2. MS Society. Healthcare Appointments. Available at: https://www.mssociety.org.uk/care-and-support/health-and-social-care/health-care/appointments. Accessed April 2020.
  3. MS Trust. Types of MS. Available at: https://www.mstrust.org.uk/about-ms/what-ms/types-ms. Accessed April 2020.
  4. MS Trust. Secondary Progressive MS. Available at: https://www.mstrust.org.uk/a-z/secondary-progressive-ms. Accessed April 2020.
  5. National MS Society. Secondary progressive MS. Available at: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS. Accessed April 2020.
  6. MS Society. Early Treatment. https://www.mssociety.org.uk/about-ms/treatments-and-therapies/disease-modifying-therapies/early-treatment. Accessed May 2020.
  7. MS Trust. Managing Relapses. Available at: https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses. Accessed April 2020
  8. MS Trust. Secondary progressive MS. Available at: https://www.mstrust.org.uk/a-z/secondary-progressive-ms. Accessed June 2020.
  9. Ntoskou, K., Messinis, L., Nasios, G., Martzoukou, M., Makris, G., Panagiotopoulos, E. and Papathanasopoulos, P. (2019). Cognitive and Language Deficits in Multiple Sclerosis: Comparison of Relapsing Remitting and Secondary Progressive Subtypes. Available at: Openneurologyjournal.com. Available at: https://openneurologyjournal.com/VOLUME/12/PAGE/19/. Accessed April 2020.