Secondary progressive multiple sclerosis (SPMS): symptoms, treatment and living with it

Multiple sclerosis is a condition in which the immune system attacks the brain and spinal cord, damaging the layer that protects nerves. The NHS describes three main types: relapsing remitting, secondary progressive and primary progressive. In relapsing remitting MS there are flare-ups of symptoms followed by remission. The MS Trust explains that many people initially diagnosed with relapsing remitting MS go on to develop a progressive form, called secondary progressive MS, so named because the progressive phase develops secondary to the initial relapsing phase.

The main feature is gradual worsening that accumulates over time, which the MS Trust calls progression. The rate varies, typically being slow over a number of years, with periods of minor improvement or stability. Relapses become less frequent or may stop altogether, but the level of permanent change in symptoms increases.

The MS Trust says the move from relapsing remitting to secondary progressive MS typically happens 10 to 25 years after the initial diagnosis. Relapsing remitting MS is usually diagnosed under 40, so SPMS generally develops in a person's 40s or 50s. Like relapsing remitting MS it is more common in women than men.

Only a small number of people are diagnosed with SPMS at the outset. This may happen if the earlier relapsing phase went undiagnosed, because lesions did not cause symptoms or relapses were mild or attributed to another cause.

The MS Trust says that for many people the first indication that things are changing is more difficulty walking, such as stiffness, weakness or a heavy feeling in the legs, sometimes with unsteadiness or poor balance. Bladder and bowel problems are quite common, and may be linked to sexual problems because they are all caused by lesions in the spinal cord.

• Fatigue, described as exhaustion out of proportion to activity.

• Spasticity and muscle spasms.

• Problems with concentration, memory or planning.

• Anxiety or altered mood.

• Numbness, tingling or burning sensations, including nerve pain.

• Symptoms that are not obvious to other people, often called invisible symptoms.

The NHS says there is no single test to diagnose MS and that the neurologist may need to monitor symptoms and test results for some time to diagnose which type you have. Tests may include checks on movement, coordination, vision, balance and reflexes, blood tests, an MRI scan, a lumbar puncture and tests of how quickly messages travel from the eyes or ears to the brain.

The MS Trust says a diagnosis of SPMS is often a clinical diagnosis. A neurologist might see a pattern of worsening symptoms without necessarily seeing more lesions on MRI, the pattern being a slow progressive loss of nerve cells themselves. It adds that MS is increasingly described as active or not active, and with or without progression.

The MS Trust says people with SPMS are often under the impression there are no treatments, and that this is not true. There is a wide range of options for individual symptoms and, for some people with early or active SPMS, a disease-modifying drug may be appropriate. Some drugs used in relapsing remitting MS are also licensed for SPMS if you still have relapses or evidence of active disease, and siponimod (Mayzent) is specifically licensed for some people with active SPMS to slow disability progression.

NICE published technology appraisal guidance on siponimod for treating SPMS in adults (TA656) in November 2020, and NICE's guideline on MS in adults (NG220) sets out what care to expect, including diagnosis by a consultant neurologist and a review at least once a year covering all aspects of care.

The MS Trust notes that living with SPMS can mean living with a degree of uncertainty, as symptoms can get more or less intense or fluctuate. It advises looking after general health: a well-balanced diet, staying as active as possible, drinking sensibly and not smoking, and going for health checks and vaccinations offered. It recommends a review of MS once a year, more often if there is a substantial change, and keeping a simple symptom diary to share with the MS team.

It also states that MS is not a terminal condition and is rarely a direct cause of death, and that for most people the changes are very gradual over a number of years. The NHS says most people with MS live into old age, although life expectancy is, on average, a few years less than the general population, and that treatments are improving.

The NHS says to see a GP if you think you have symptoms of MS, and to call 999 or go to A&E if you have sudden weakness or numbness in one arm, loss or blurring of vision, or problems with balance and co-ordination, as these could be signs of a stroke.

People already diagnosed should contact their MS team or GP for a significant change in symptoms rather than waiting for the annual review, as the MS Trust advises. The MS Trust adds that people more severely affected may be more susceptible to infections, so seeking treatment promptly when needed is important.

NHS care is led by neurologists and MS specialist nurses, with physiotherapy, occupational therapy and rehabilitation services, and disease-modifying treatment prescribed through specialist MS services in line with NICE guidance. The NHS notes that you will be supported by different healthcare professionals, including a specialist MS nurse.

Some people also see private neurologists or neuro-rehabilitation services for second opinions or additional therapy. Drug treatment decisions are usually coordinated with the NHS team so that monitoring is consistent.