Multiple sclerosis can affect the brain and spinal cord and cause a range of symptoms, including problems with vision, arm and leg movement, sensation and balance.
The condition slightly reduces life expectancy and causes occasionally mild – but usually serious – disability. There are around 100,000 people with diagnosed MS in the UK, with most receiving their diagnosis in their 20s and 30s, although it can develop at any age. It is about two to three times more common in women than men.
MS starts with individual relapses or gradual progression. More than eight out of every 10 people with MS are diagnosed with the ‘relapsing remitting’ type, which causes episodes of new or worsening symptoms.
These relapses typically worsen over a few days, last for days, weeks or months, then slowly improve over a similar time period. Relapses often occur without warning, but are sometimes associated with a period of illness or stress.
Around half of people with relapsing remitting MS will develop secondary progressive MS within 15-20 years, and the risk of this happening increases the longer individuals have the condition.
Just over one in 10 people with the condition start their MS with a gradual worsening of symptoms. In primary progressive MS, symptoms gradually worsen and accumulate over several years, and there are no periods of remission, though people often have periods where their condition appears to stabilise.
Causes of MS
MS is an autoimmune disease which is believed to be caused by an interaction between genetic make-up and environmental factors; particularly those to which people are exposed in the first 10 or 15 years of life.
Migration studies show when you have families moving from a low prevalence area like Spain (one in 1200 approx.) to a high prevalence one such as Scotland (one in 400), the risk of MS for children goes up.
But for people aged over mid-teens, it does not. People in higher prevalence areas may have less sunlight exposure, and therefore less vitamin D, and more exposure to viral infections.
We don’t fully understand the genetic element of MS but genetics are likely to have a small effect on susceptibility. Research continues into MS causes, including recent focus on the Ebstein-Barr Virus (EBV) and its potential link to MS; but much more work is required on this front.
The search for a cure
We had nothing to treat MS 30 years ago, but now there are around half a dozen approved treatments – with more coming through.
All of these treatments are for relapsing MS and, as yet, there is no approved therapy for the progressive type. Once in that progressive state when the body starts to deteriorate, there is no treatment to slow down, halt or reverse it. e treatment landscape is changing, however.
There are several reasons for optimism, including the emergence of ocrelizumab, which targets B lymphocytes in the immune system. It has been shown to reduce the rate of progression in primary progressive MS cases.
The drug is currently under consideration by the US Food and Drug Administration but is not yet available here in the UK.
Among a number of other drugs at various trial stages is siponimod, which has shown beneficial effects in secondary progressive MS and is certainly a step in the right direction.
In all the recent and current trials, it is unclear whether these treatments work in a subpopulation of progressive patients or for everybody. Trials have tended to involve slightly younger people at the earlier stages of the disease, rather than those with advanced progressive MS.
High dose Biotin, which targets energy metabolism rather than inflammation, is a potential option for all with progressive MS. It has been shown to bene t both forms of progressive MS and a large trial is now underway.
Generally, I am optimistic about future treatment for progressive MS. What the MS field has achieved in the last three decades is impressive; more progress has been made than with most other neurological conditions.
In the early 90s, nearly all of the focus was on controlling relapses. e understanding was that if you took out the relapses, you could prevent the progressive disease. That has not turned out to be the case, but in the last five years researchers have started to focus on progressive MS. One day there may be treatment options that can actually restore lost functions or at least maintain functions at risk of deterioration.
Traditionally there was an average of six years between the first symptoms emerging and a primary progressive MS diagnosis. is now stands at around 3.8 years, according to one recent clinical trial.
This is still a relatively long time, mainly because of a lack of treatment options for early diagnosis. Progressive MS is much slower than many other neurodegenerative conditions. Given that there’s no treatment, there’s an argument that doctors shouldn’t vigourously pursue a progressive MS diagnosis for someone who’s living a full and active life.
Early symptoms might initially be assumed to be something minor, like a trapped nerve – but greater awareness of progressive MS might help the link to be made with MS at an earlier stage.
With relapsing MS, we currently have no way of knowing who is going to have lots of attacks and who will be minimally affected years down the line.
With no predictive tests, treatment is centred around handling uncertainty. All the drugs are directed at reducing the frequency of relapses, which occur on average every 18 months if untreated.
What relapses look like
The symptoms of a relapse depend on where the inflammation is. If it is in the optic nerve, for example, a person may experience blurred vision and discomfort when they move their eyes. Inflammation in the spinal cord can affect arms, legs and bladder function. If it is in the brainstem, it can affect eye movements and cause tunnel vision, speech problems and other neurological problems.
Outlook for people with MS
On average, life expectancy is reduced by around five years, while there is a very small proportion of people with MS who die young. This is becoming increasingly rare as drugs advance. Although the progressive stage is not fatal, disability can be severe. However, the disease is much slower in its progress than motor neurone disease, for example.
Impact on the brain
A lot of tissue is generally lost through brain and spinal cord atrophy caused by a loss of nerve cells. As the brain and spinal cord shrink, physical functions like motor, bladder and bowel control, and co-ordination, can deteriorate. e cognitive speed of information processing can also slow down. If information is arriving at a fairly fast rate, it can be difficult for the individual to gather and process it. In general, the ability to process information is relatively intact, but the speed of processing is reduced.
There are a lot of symptomatic therapies which are both pharmacological and non-pharmacological. Commonly, patients will receive cognitive and physiotherapy sessions, such as training on specific areas including bladder control and pain management. There are some approved therapies to improve walking, but these tend to have around a 50% success rate, with many people experiencing only temporary improvement.
The rise of self-prescription
Members of the MS population are generally very motivated, with a tendency to look up treatments on the internet. In my experience, a lot of patients are taking a fairly high dosage of vitamin D supplements, as recommended.
Others are also taking biotin or anti-ageing, anti-oxidant supplements. Biotin has also been known to interfere with blood tests so it is important that people with MS are encouraged to discuss what they are taking with an MS neurologist. Of course, it is ultimately up to the individual what they decide to take.
Care provision challenges
There aren’t enough neurologists in the UK, which means it can be difficult for MS patients to access the expertise that can help them.
This shortage has made the role of specialist MS nurses evermore crucial within the care model. Neurologists still pitch in with complicated cases and diagnosis, but nurses are increasingly important in terms of immediate access to care.
Access to physiotherapists, occupational therapists and MS centres based in the third sector is also on the rise.