Understanding your MS Label

Sometimes labels can be a welcome thing. The designer tag on your jeans, for example, or the one that promises a 50% discount on those shoes you’ve fallen in love with. But other labels, particularly in Multiple Sclerosis (MS) can be just downright confusing. Medical terms such as: ‘RRMS’, ‘SPMS’, ‘PPMS’… can be a source of much confusion, not least because very few people conform to textbook cases. Hopefully we can help clear things up for you.

Diagnosing MS is a tricky process. For starters there are a number of similar conditions with very similar symptoms that need to be ruled out. MS is not one-size fits all. Every person living with MS has their own unique story and a range of symptoms which accompany it.  Establishing which phase of MS you have will allow your doctor to tailor your care accordingly1. So what are the different phases?

Relapsing–Remitting MS (RRMS)

The most common form of MS is known as relapsing–remitting MS (RRMS). Around 85% of people with MS are diagnosed with this type, typically in their 20s or 30s. RRMS tends to affect women twice as frequently as men, and it’s been suggested that this might have something to do with hormones. People with RRMS experience periods where symptoms become more noticeable (relapses), before then fading away either partially or completely (remission). The triggers can vary (for example, stress, heat or infection), but relapses are related to auto-immune attacks on myelin (the protective coating that surrounds the nerve fibers in the central nervous system [CNS]) and associated inflammation2.

These auto-immune attacks can result in small areas of damage called lesions (or plaques). These can occur anywhere in the CNS, although people living with RRMS tend to have more lesions in the brain than the spinal cord3. Each relapse of the condition can see the return of old symptoms or cause new symptoms. When a relapse happens, symptoms usually peak in a matter of hours or days, and can persist for weeks, though this varies from person to person and from relapse to relapse. Some symptoms may come and go or only appear once3. The symptoms experienced depend on the area of the brain or spinal cord that has been damaged, but can include eye pain and vision problems, numbness and tingling, sensitivity to heat, dizziness, bowel or bladder problems, difficulty moving, muscle stiffness, fatigue, balance issues, difficulty thinking clearly and even depression4.

Relapses can also vary in their severity. Symptoms can be mild, but they can also be so severe that they require hospital treatment. People with RRMS usually experience complete remission after a relapse, however lingering problems can occur if damage to myelin is severe (though these may still improve in the following months)5.

The course of RRMS usually shifts over time to the progressive phase known as Secondary Progressive MS (SPMS); on average, around 80% of people transition to SPMS after 15 years6.

Secondary Progressive MS (SPMS)

SPMS, is characterized by a gradual worsening of disability, rather than relapses and recovery. This type of MS can be hard to diagnose, and many neurologists will wait for a period of 6 months of progression independent of relapses, before making such a decision7. Generally speaking, SPMS involves less inflammation and more brain changes due to loss of nerve fibers8.  Brain changes happen naturally to us all with age, but are accelerated in people with MS. Some people may still experience relapses (relapsing SPMS, or rSPMS), but symptoms don’t usually disappear completely after relapses9.

As your condition progresses, you may find you have more difficulty getting around, but there’s no way of saying how quickly these changes might occur or to what extent. The majority of people with MS do not become severely disabled. In fact, two-thirds remain mobile, although they may need a walking aid. While there is currently no ‘cure’ for any form of MS, SPMS symptoms can be managed with integrated care including treatments, physiotherapy, exercise and dietary adjustments10. A holistic approach is key to maintaining comfort and productivity, and enhancing quality of life which can be supported by tracking your symptoms regularly to help you discuss your MS with your doctor 11.

Primary Progressive MS (PPMS)

This is a relatively rare phase of MS, diagnosed in around 10% of people with MS, typically in their 40s and 50s. Unlike RRMS, this phase  of MS seemingly affects men and women equally. From the outset the condition is progressive, with symptoms gradually worsening over time. With PPMS, lesions are more common on the spinal cord and less inflammation is seen. While symptoms of RRMS typically include fatigue, vision problems and muscle weakness, PPMS is associated more often with motor control difficulties, which mean you may have more difficulty walking or caring for yourself. That said, the unpredictability of the MS means there may be long periods when symptoms don’t appear to get worse. It’s possible for people in this phase of MS to continue to experience relapses12.

What’s in a name?

Regardless of how your MS is labelled, there’s still no saying how the condition will progress. After all, each person is unique and our bodies can react very differently to the same condition. This means that while experts find the different terms to describe MS useful, you might find your symptoms don’t actually fit so neatly into any of the boxes. Ultimately, your condition is as unique as you are, and the way in which it is managed should be tailored according to your specific symptoms and your personal experience of the condition – and your preferences. Your doctor should recognize this and work with you and the rest of your healthcare team to ensure you can get on with leading a happy and productive life. Designer jeans, optional.

References:

  1. Website ‘MS Trust’ MS: the facts. Available at: https://www.mstrust.org.uk/about-ms/what-ms/ms-facts
  2. Website ‘MS Trust’ Relapsing remitting MS. Available at: https://www.mstrust.org.uk/a-z/relapsing-remitting-ms-0
  3. Website ‘National MS Society’ Relapsing-remitting MS (RRMS) Available at: https://www.nationalmssociety.org/What-is-MS/Types-of-MS/Relapsing-remitting-MS
  4. Website ‘Medical News Today’ Signs and symptoms of MS in women. Available at: https://www.medicalnewstoday.com/articles/324944.php
  5. Website ‘Medical News Today’ What to expect with advanced MS. Available at: https://www.medicalnewstoday.com/articles/311411.php
  6. Website ‘Web MD’ Secondary Progressive Multiple Sclerosis. Available at: https://www.webmd.com/multiple-sclerosis/secondary-progressive-multiple-sclerosis#1
  7. Website ‘MS Society’ Secondary Progressive MS. Available at: https://www.mssociety.org.uk/about-ms/types-of-ms/secondary-progressive-ms#
  8. Website ‘Healthline’ Understanding Multiple Sclerosis (MS). Available at: https://www.healthline.com/health/multiple-sclerosis
  9. Website ‘MS Trust’ Managing Relapses. Available at: https://www.mstrust.org.uk/about-ms/ms-symptoms/managing-relapses
  10. Website ‘National MS Society’ MS the disease. Available at: https://www.nationalmssociety.org/About-the-Society/Press-Room/MS-the-Disease
  11. Website ‘Nursing Times’ An overview of multiple sclerosis and its holistic management. Available at: https://www.nursingtimes.net/clinical-archive/neurology/an-overview-of-multiple-sclerosis-and-its-holistic-management-19-12-2016/
  12. Website ‘MS Trust’ Primary Progressive MS. Available at: https://www.mstrust.org.uk/a-z/primary-progressive-ms

 

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