Features

Clinical: get the message on MS

28 March 2019

Multiple sclerosis is one of the most common neurological conditions affecting adults. Changeable yet incurable, it can take years to manifest fully. But children can develop it too, writes journalist John Windell.

Last October, the Hollywood actor Selma Blair revealed she had finally been diagnosed with multiple sclerosis (MS) after struggling with the symptoms for many years. ‘I am disabled. I fall sometimes. I drop things. My memory is foggy. And my left side is asking for directions from a broken GPS,’ she said. ‘It can be overwhelming in the beginning. You want to sleep. You always want to sleep.’

With affecting simplicity, she described a condition that has a typical set of symptoms but rarely affects any two people in exactly the same way. MS Awareness Week (22 to 28 April) will highlight the 110,000 UK people suffering from this neurological disease (MS Society, 2018).

MS affects the central nervous system, and is triggered when the outer sheath of nerve cells (myelin) becomes sclerotic, which disrupts the central nervous system’s communication with other parts of the body.

The result of this breakdown can be seen in many different potential symptoms. These include blurred vision, muscle stiffness and spasms, slurring or stuttering speech, a loss of balance and coordination, weakness in the arms and legs, reduced bladder control and cognitive difficulties. And, as with Selma Blair, extreme fatigue.

The extent of MS

Just over 5000 people are newly diagnosed with MS each year (MS Trust, 2018). The condition can appear at any age, although it’s most commonly diagnosed in people in their 20s and 30s. Women are more than twice as likely to develop it as men (MS Society, 2018).

Some people with MS will have just one or two symptoms whereas others will experience several. For some it will just be a mild inconvenience, but for a few the condition will become a severe disability. What’s more, the type and severity of the symptoms can vary not just day to day but also hour to hour. In any case, once people develop MS, they will have it for the rest of their lives. There is no cure, although there are therapies and drugs that can help to manage and control the symptoms.

What triggers it?

MS is thought to be the result of an autoimmune response where, for some reason, the body’s defence system ends up attacking the very tissue it is supposed to be protecting. Quite what triggers this misdirected response is not fully understood. Viral infections might be the cause, but so might genetics, obesity, smoking and a lack of a sunshine and vitamin D. The further away you live from the equator, the higher your risk – in the UK, the prevalence is highest in the north of Scotland, and Orkney has the highest recorded prevalence worldwide, although genetics is also suspected of playing a part here (Visser et al, 2012). It’s possible that MS is triggered by a combination of all these factors.

Whatever the cause, the evidence suggests that the incidence and prevalence of MS has risen in recent decades. This is likely to be a result of two developments in this time. First, quicker and more accurate diagnosis. Second, although the condition can reduce life expectancy, better care and healthier lifestyles mean people are living with MS longer than they used to.

Children and MS

One group of people who will have to live with the condition longer than most are children and young people.

The number of children with the condition is small but getting bigger, says Linden Muirhead, director of information at the MS Trust: ‘The last figure we had was about 230 known cases, and around 50 going through a diagnostic process, which can be quite complex. It is probably growing because of better diagnostic techniques and more of an acceptance that it can be a childhood condition. Around 5% of adults say they experienced their first symptoms before the age of 16 but weren’t necessarily diagnosed.’

The symptoms for children are the same as for adults, although again they tend to manifest in very individual ways. ‘Children can also have a subset of symptoms that are slightly different,’ says Linden. ‘Fortunately, they have fewer problems with sensitive issues such as bladder and bowel control, but often their early symptoms are things like blurred and double vision, numbness and a persistent sensation of pins and needles in the arms and legs.’

They may also find it difficult to absorb and process information. ‘This can be a real challenge when they are in a learning environment, because it can put them behind,’ says Linden. Undiagnosed children are at risk of being dismissed as slow or lazy. ‘Fatigue is a big factor in MS and underpins a lot of other things. The exhaustion can be all out of proportion with the energy expended.’

No special treatment exists for children with MS, so in many cases they are given the same disease-modifying therapies to reduce the frequency and severity of relapses. ‘Some of the treatments can be quite aggressive in that they suppress the immune system,’ says Dr Evangeline Wassmer, paediatric neurologist at Birmingham Children’s Hospital. ‘As a medical team, we are cautious about starting children on this sort of therapy. Parents can be quite cautious too. They want a definite diagnosis first.’


The three types of MS

  1. Relapsing remitting MS. The symptoms can flare up for days, weeks or even months, then recede, allowing the individual to recover. An estimated 85% of people with MS, including children, are diagnosed with this form of the condition.
  2. Secondary progressive MS. Following a relapsing remitting stage, the remissions get shorter and less frequent, and the symptoms and disability gradually become more apparent.
  3. Primary progressive MS. The condition gets worse, the resulting disability becomes more severe, and any relapses are rare.

Treatments and therapies

The sticking point with these therapies is that they have often not been tested on children and so are not licensed. All the same, they can be prescribed and, as Linden points out, early treatment is preferable because ‘it leads to better long-term health outcomes’.

Evangeline says: ‘It has been a challenge to get children on to this medication. But we hope that will soon change as NHS England is about to recognise paediatric MS as a specialist service, and that should improve the diagnosis and treatment for these children.’

For adults, symptomatic treatments are available, such as pain-relieving drugs, physiotherapy to counter muscle spasms and stiffness, and steroids for visual problems. Complementary therapies also have a role to play. ‘Massage is good for pain or spasms, and mindfulness is good for fatigue,’ says Linden. ‘But it can be hard to get children to engage in those sorts of things. The key point is the holistic nature of treatment, and to make sure that other aspects of their lifestyle, such as exercise, are also being managed.’

The cognitive aspects of the condition also need to be addressed, says Evangeline. ‘Children are still acquiring skills, so these issues are more critical for them. Often it affects their attention, ability to process, visual and spatial skills, and memory. It can be distressing for them.’

The psychological strain of having MS means that anxiety and depression can come hand in hand. ‘Especially in the adolescent years, mental health is a big challenge,’ says Linden. ‘They can have problems with peer groups, not just academically but socially as well.’ Some young people and adults with MS also indulge in high-risk behaviour, says Evangeline: ‘When they are in remission and feeling fine, they try to live life to the limit because it might be the only chance they get.’


Fast facts on MS

  • 2.5 people worldwide have MS
  • 110,000 people in the UK
  • 100 new cases are diagnosed a week
  • 2% - 10% have symptoms before the age 16
  • Life expectancy is 6-7 years shorter in people with MS

MS Society, 2018a; 2018b; MS Trust, 2018b


How CPs can help

For Linden, CPs can do best to understand the condition and the issues families might face. ‘Keep an eye out for when children are having issues integrating with their peer group or if they are taking lot of time off because of their MS,’ she says. ‘Talk to the family about the child’s needs to make sure they feel supported. Every child is an individual and MS manifests very individually, so when you put those together you have a very complex condition to think about.’

Evangeline echoes this: ‘Once children are diagnosed they need extra help and support to ensure they are not struggling at school. They often suffer from fatigue, so they may need a shorter school day, extra time for exams or fewer exams. If adults relapse, they tend to take time off work – children are often expected to just carry on. You also need to look out for the behavioural and mood changes that children can have. School nurses and health visitors can help here by pointing families towards appropriate help and counselling if needed.’


Resources

The two leading charities for MS in the UK provide information and support on the condition:


 

References

MS Society. (2018a) MS in the UK. See: https://www.mssociety.org.uk/care-and-support/resources-and-publications/publications-search/ms-in-the-uk# (accessed 8 March 2019).

MS Society. (2018b) My child has MS - a guide for parents booklet. See: https://www.mssociety.org.uk/care-and-support/resources-and-publications/publications-search/my-child-has-ms---a-guide-for-parents-booklet

MS Trust. (2018) Prevalence and incidence of multiple sclerosis. See: https://www.mstrust.org.uk/a-z/prevalence-and-incidence-multiple-sclerosis (accessed 8 March 2019).

Visser EM, Wilde K, Wilson JF, Yong KK, Counsell CE. (2012) A new prevalence study of multiple sclerosis in Orkney, Shetland and Aberdeen city. Journal of Neurology, Neurosurgery & Psychiatry 83(7): 719-24.

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