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Primary progressive MS exposed Key information at a glance

  • For about 10-15% of people diagnosed with MS, there is an absence of relapses and remissions and progression occurs from the outset - this is known as primary progressive MS. It is estimated that 10-15,000 people have primary progressive MS in the UK.
  • The rate at which progression occurs varies widely between individuals. At times it may be at a standstill, or it may even improve very slightly for a short period. For others the progression is more rapid. However, onset is typically slow with symptoms steadily increasing over a period of months or years.
  • The majority of people with primary progressive MS are diagnosed in their 40s and 50s; this is often about the same age that someone with relapsing remitting MS typically moves into the secondary progressive stage of their MS.
  • About the same number of men and women are affected by primary progressive MS.
  • In the majority of people with primary progressive MS the spine is predominantly affected by MS lesions. Although there can also be lesions in the brain, they tend to be smaller and fewer in number than in the other types of MS.
  • Inflammation is less dominant in primary progressive MS than in relapsing remitting or secondary progressive MS, but results in more damage to the nerves themselves. It is this nerve damage that is thought to be a major contributor to the non-remitting, progressive nature of primary progressive MS.
  • Diagnosing primary progressive MS can be a long and frustrating process because there are many other conditions with similar symptoms. Establishing a diagnosis is essentially a process of elimination, ruling things in or out, with the neurologist trying to ensure that there is no alternative explanation for the symptoms and findings. They will also want to see firm evidence of at least one year of progression to secure a diagnosis.
  • In more than 80% of people with primary progressive MS, the first symptom experienced is a stiffness and/or weakness in both legs that gradually worsens.
  • Although people with primary progressive MS don't have relapses, it is possible to experience an acute deterioration in function due to other factors such as pain or an infection.
  • There is currently no disease modifying therapy available that can alter the course of primary progressive MS, but trials are ongoing. Management focuses on three key areas: symptom management; prevention of complications; and promoting general health and wellbeing.
  • It is unusual for steroids to be prescribed for primary progressive MS, but sometimes a one-off course may be given if a person begins to experience a period of deterioration. As with the other types of MS, there is no evidence that steroids alter the long-term course of primary progressive MS.
  • Rehabilitation therapies, such as physiotherapy, may be beneficial. They aren't curative, but they can help you make the best of, and maintain, functions that will help you manage your symptoms and live your life as fully as possible.
  • It is important to make the most of both your physical and emotional wellbeing to enable you to do the things you enjoy as well as the things you have to do.
  • Historically, primary progressive MS has been the least studied of the different clinical types of MS. Trials have been more challenging for many reasons: inadequate diagnostic criteria; the relative rarity of the condition; use of measures of effectiveness that are not relevant or sensitive to the slow changes seen in primary progressive MS; and the processes that need targeting, neuroprotection and repair, are more testing.

There is no preventative action that you could or should have taken to prevent you from developing primary progressive MS.

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