As part of a series on how the prognosis and treatment for different diseases have changed over time, here are the basics of multiple sclerosis (MS) – as well as information on new therapies coming on stream and what the future holds for those with MS.
What is it and who gets it?
Multiple sclerosis is a neurological autoimmune disease in which the immune system attacks the myelin sheath, the protective layer around nerve cells in the brain and spinal cord. This process results in disruption and slowing down of messages sent along the nerve cells from various parts of the body to the brain and spinal cord. MS is most commonly diagnosed in people in their 20s, 30s and 40s, although it can develop at any age. It is three times more common in women than men.
What are the symptoms of MS and how is it diagnosed?
The main symptoms include fatigue, loss of vision, problems controlling the bladder, numbness or tingling in different parts of the body, muscle stiffness and spasms and problems with balance and co-ordination. “About one-quarter of people present with optic neuritis, which is the painful loss of vision in one eye and the reduced ability to see the colour red,” explains Dr Hugh Kearney, neurologist at St James’s Hospital and senior clinical lecturer in neurology at Trinity College Dublin. Other symptoms at onset of the condition are difficulties with balance and co-ordination and changes in sensations in the legs and bladder function. “Fatigue is also common and one of the most debilitating symptoms of the disease,” says Dr Kearney.
Diagnosis of MS is based on the clinical symptoms experienced by the patient, supported by changes identified on an MRI scan. Historically, MS was categorised into three distinct sub-types – relapsing remitting MS, primary progressive MS and secondary progressive MS – but Dr Kearney says that looking at the condition as a continuous biological spectrum is now deemed more helpful to progress research and treatment.
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The challenges of being diagnosed with a long-term incurable condition such as MS can be very difficult initially. “MS predominantly affects young women at the beginning of their careers and/or planning a family and, at diagnosis, it is the consequences of a long-term condition on mortgages, relationships and family life that often comes to the fore more than the physical symptoms themselves,” says Dr Kearney.
What treatments are available now and how do they compare to treatments in the past?
While MS is incurable, there are a number of disease-modifying drugs that can treat it. The introduction of interferon beta as the first disease-modifying drug 30 years ago marked a turning point in the treatment of MS and, since then, there has been significant progress in the development of a range of disease-modifying drugs that target immune cells in different ways to reduce the autoimmune response.
“A lot of newly diagnosed patients can now live with MS if they are on an effective form of treatment,” explains Dr Kearney. He is leading a new study seeking to identify tests that will predict the response to various treatments, as not all individuals with MS respond to the medicines in the same way. “We plan to track about 150 patients newly diagnosed with MS by giving them an eye test, a blood test and a newly developed MRI technique before treatment. One year later, we will observe their response to treatment and analyse the baseline data to see if the results of these pre-treatment tests correlate with treatment response. If these predictive tests are validated, they could be translated into clinical care to maximise the treatment at an individual level,” he explains.
A form of advanced treatment called autologous haemotopeitic stem cell transplantation (a HSCT) is an option for patients who don’t respond to disease-modifying drugs. Such patients are assessed by a multidisciplinary team and then referred to London for the treatment itself. “This treatment is suitable mainly for patients with active disease and a lot of relapses but less so for patients where progression of the disease is the dominant feature,” explains Dr Kearney.
Specific symptoms such as nerve pain, bladder problems and depression/anxiety experienced by those with MS are also treated by pharmacological and non-pharmacological treatments.
Exercise programmes devised by physiotherapists specialising in MS can reduce muscle tightness and spasms. The charity MS Ireland is currently campaigning for a national physiotherapy programme for people with MS which would provide both group physiotherapy programmes and individual appointments for people with MS. “Studies have shown the effectiveness of physiotherapy in reducing symptoms’ severity, disability, falls and reduced visits to GPs and emergency departments,” says Dr Susan Coote, exercise and physiotherapy co-ordinator with MS Ireland. She adds that physiotherapy also improves individual’s mental health, their participation in physical activities and enables them to live well at home.
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Dr Rebecca Maguire is an associate professor in the department of psychology at Maynooth University and a person with MS. “Many people with MS live well and full lives but there is an increased risk of depression and anxiety in people with MS compared to the general public.” Dr Maguire says that knowing how to pace yourself and how to manage your work/life balance is very important.
“It’s about managing your time, energy and exercise. People who exercise fare better and exercise has a positive association with psychological wellbeing. Self-efficacy – the confidence in your own ability to have a sense of control over your environment and your day and to know the limitations of what you can and can’t do is also very important.”
Have there been any breakthroughs in understanding the condition recently?
One of the most recent breakthroughs in the understanding of the condition has come from an American study which links exposure to the Epstein-Barr virus to MS. This study found that antibodies produced by the body to fight the infection with the Epstein-Barr virus may mistakenly go after the brain and spinal cord, damaging the myelin sheath of nerve cells in the central nervous system.
“The question now is what if the Epstein-Barr virus – which is a very common virus – could be prevented with a vaccine and would this then lead to the prevention of MS?” asks Dr Kearney.
What are the services like for people with multiple sclerosis in Ireland?
Aoife Kirwan from MS Ireland says services for people with MS vary across the country. “There are low numbers of specialist personnel including neurologists, MS nurses and neuropsychologists and people are waiting an entirely unreasonable amount of time to access appropriate accessible housing,” says Kirwan. Many people with MS also have difficulty securing appropriate home supports and personal assistants to allow them to continue living in their own homes for as long as possible.
MS Ireland – which is seeking funding to employ more senior physiotherapists – is also looking for funding to extend the opening of the national MS respite centre from 40 weeks to 50 weeks a year. “The national MS respite centre plays a crucial role in ensuring family carers are supported while delivering a range of therapeutic services, neurological assessments and social activities, all designed to prevent crises and keep people living with neurological conditions well at home,” says Kirwan.
What does the future hold for people with MS?
Ava Battles, chief executive of MS Ireland, says there are still a lot of challenges for people living with MS. “A lot of these challenges are around accessing services so people can live well with MS. People want to stay working. They want to stay independent. They want to stay contributing to society but, for them to do that, we have to build the services around them to keep them well.”
