Noticing the early signs of SPMS

Multiple Sclerosis (MS) is not a one-size-fits-all condition and is thought of as a spectrum which people tend to move across throughout their lives. Often, people with MS are diagnosed with the relapsing remitting form (RRMS)¹, which is the most common phase of MS. However, symptoms can change or you might start having new or different symptoms as time goes on. This may be a sign you are transitioning towards secondary progressive MS (SPMS)². It is called ‘secondary’ because this is the phase after the relapsing remitting phase³.

With SPMS, symptoms and disability gradually worsen over time². Usually these changes are slow but it is important to look out for any signs of worsening or changes in your symptoms and to discuss this with your MS medical team in order to receive the best care possible⁴.

Due to these changes being slow and gradual, recognizing when MS moves from a relapsing type to secondary progressive is not always straightforward. There is also no way of detecting SPMS on an MRI and, therefore, monitoring changes in symptoms is the most effective way to detect it early². This early diagnosis and detection is crucial to ensuring you receive the right care from your MS team, which could possibly lead to slowing down the rate of progression⁵. There are signs worth looking out for in order to get an early diagnosis:

Relapses: 

People with SPMS typically experience fewer relapses than those with other types of MS or may find they don’t have them at all⁶. To be diagnosed with SPMS, disability levels need to increase independently of any relapses that occur². Therefore, it is really important to track your relapses and make sure you accurately record the dates.

Symptoms: 

There are a wide range of possible symptoms you may experience in the early stages of SPMS. These can include⁴: 

• Increased fatigue and feeling exhausted
• Difficulty with bladder control
• Difficulty walking, with more reliance on walking aids

There is also a possibility of changes to invisible symptoms such as:

• Cognitive changes, such as memory issues
• Vision problems
• Pain

These invisible symptoms can be harder to spot, but may be important signs of progression⁵. It is sometimes difficult to notice these changes yourself and it can therefore be helpful for family and friends to spot these symptoms with you. 

Non-MS factors:

There are other factors which can impact your MS. These can include: the weather, stress levels, time of year, exercise and diet². Therefore, it is important to also keep a note of these external factors which may be affecting you in ways you didn’t realize.  

It will take time to understand the changes in your MS and to receive a full SPMS diagnosis. Because the only way to receive this confirmation is through experience, often the diagnosis comes with the benefit of hindsight⁵. Make sure you track all changes and discuss these with your MS medical team to ensure you receive the best care possible. 

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 November 2020
2. MS Trust. Types of MS. Available at: https://www.mstrust.org.uk/about-ms/what-ms/types-ms. Accessed November 2020
3. MS Trust. Secondary progressive MS. Available at: https://support.mstrust.org.uk/file/SPMS-A5-Booklet-Oct-2018-FINAL-WEB.pdf. Accessed November 2020
4. National MS Society. Secondary progressive MS. Available at: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Secondary-progressive-MS. Accessed November 2020
5. Thrower, B. (2007). Clinically isolated syndromes: Predicting and delaying multiple sclerosis. Neurology, 68(Issue 24, Supplement 4), pp.S12-S15.
6. MS Trust. Secondary Progressive MS. Available at: https://www.mstrust.org.uk/a-z/secondary-progressive-ms. Accessed November 2020.