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SPMS explained

Multiple Sclerosis (MS) can be thought of as a spectrum, which people often move along through their experience of MS. Most people with MS are diagnosed with the relapsing remitting form (RRMS)1, however, symptoms may change as time goes on and this may signify a move to secondary progressive MS (SPMS)2. It is called ‘secondary’ because the progression happens after the relapsing remitting stage3.

SPMS is a phase of MS in which disability and symptoms gradually worsen over time. Changes are usually gradual, but it is important to look out for any signs of worsening symptoms, so that you can discuss them with your MS specialist, neurologist, or MS nurse early, as different types of MS require varying levels of care4.

SPMS Explained
SPMS Progression Table

In SPMS, relapses can become less frequent or even disappear. 
But symptoms that are getting worse – or new symptoms – 
may become more apparent as disability progresses.

FAQs

What exactly does MS progression mean?

Multiple Sclerosis (MS) can be thought of as a spectrum, which people often move along through their life. The way the disease changes is unique to each individual and to the phases of MS.

Subtle worsening in the type, severity and frequency of symptoms, whether visible or invisible, physical or cognitive, can be signs of MS progression6,7.

If symptoms do seem to be getting slowly worse, it is important to take action as soon as possible, because the kinds of treatments and support needed – both practical and emotional - might change too.


What are the signs that my MS might be progressing?

It is worth remembering that the signs of MS progression look different for each person, however symptoms may include8:

  • Cognitive changes, such as memory issues
  • Increased fatigue and feeling exhausted
  • Difficulties with bladder control
  • Difficulties walking, with more reliance on walking aids.

Changes in ‘invisible’ symptoms of MS such as fatigue, pain and vision problems, can be harder to spot, but these may be important signs of MS progression8. Family and friends can help in spotting signs of the condition progressing, as they may be the people who notice small symptom changes first.


Why is SPMS difficult to diagnose?

Due to the changing nature of MS symptoms, a transition from RRMS to SPMS can be difficult to detect, so SPMS is often diagnosed with the benefit of hindsight8.

There is no test to show that someone’s MS is now secondary progressive9. Diagnosis is often made by looking at changes across the previous year or so. Some changes are described as ‘invisible’: symptoms such as fatigue, pain and vision problems can be harder to spot, but these are very important signs of MS progression.


Why is it important to spot symptom changes early?

Early SPMS diagnosis and management is crucial to ensuring the right kind of care is received which can therefore potentially lead to slowing down the rate of disability10.

Changes in the type and severity of MS symptoms you experience can happen over time, so this progression of the condition may not be that noticeable at first. Your symptoms may become more challenging and, while it might seem strange, you may even experience fewer relapses—not more.

The individual types of MS (RRMS, PPMS, and SPMS) generally require different methods of management. Everyone has their own way of managing their MS, but by monitoring changes and communicating them to your MS specialist, neurologist, or MS nurse, you can address the possibility of your MS progressing and work with your healthcare professionals to find the right care for you.
 

References:

  1. Multiple Sclerosis International Federation. Atlas of MS 2013. Available at: http://msif.org/wp-content/uploads/2014/09/Atlas-of-MS.pdf. Accessed April 2020
  2. MS Trust. Types of MS. Available at: https://www.mstrust.org.uk/about-ms/what-ms/types-ms. Accessed April 2020
  3. MS Trust. What is secondary progressive MS?. Available at: https://www.mstrust.org.uk/a-z/secondary-progressive-ms. Accessed April 2020
  4. National MS Society. Secondary progressive MS. Available at: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS. Accessed April 2020
  5. MS Trust. Diary symptoms. Available at: https://www.mstrust.org.uk/a-z/diary-symptoms. Accessed April 2020
  6. MS Society. Secondary progressive MS. Available at: https://www.mssociety.org.uk/about-ms/types-of-ms/secondary-progressive-ms. Accessed April 2020.
  7. MS Trust. Secondary progressive MS. Available at: https://support.mstrust.org.uk/file/SPMS-A5-Booklet-Oct-2018-FINAL-WEB.pdf. Accessed April 2020.
  8. MS Trust. Secondary Progressive MS. Available at: https://www.mstrust.org.uk/a-z/secondary-progressive-ms. Accessed April 2020.
  9. Fred D. Lublin, MD Stephen C. Reingold et al. Defining the clinical course of multiple sclerosis: the 2013 revisions. Neurology. 2014; (Issue 83, Supplement 3) pp. 278‐286. doi:10.1212/WNL.0000000000000560
  10. Thrower, B. (2007). Clinically isolated syndromes: Predicting and delaying multiple sclerosis. Neurology, 68(Issue 24, Supplement 4), pp.S12-S15.