'My consultant thought I’d probably had MS for eight to ten years before I was diagnosed'
“Every year I would have two or three falls, breaking various bones, but no one could tell me why I was falling,” said Catherine Symington, describing the difficulty of receiving a multiple sclerosis diagnosis.
Despite living in Scotland - which has the highest rates of multiple sclerosis (MS) in the UK and some of the highest in Europe - the 71-year-old Glaswegian spent years fighting for doctors to take her condition seriously.
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Hide Ad“I was diagnosed back in 2017, at the age of 65, with primary progressive MS – but looking at my scans, my consultant thought I’d probably had it for eight to ten years before that,” Catherine said.
“I can’t pinpoint a time when I remember something being wrong, but I do remember in my thirties I had a year and a half of extreme fatigue when I had pleurisy and a young family – so it could be as far back as then.”
Despite having had symptoms for nearly a decade, it took Catherine a further two years to go from asking her GP to finally receiving a diagnosis.
“I just didn’t feel listened to,” she added, “especially when I expressed my worries.
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Hide Ad“I had to be really persistent with help from my daughters to get to the point of being diagnosed.”
Over 130,000 people are living with this devastating condition in the UK, and rates are growing by almost 3 per cent every year.
In England, one in every 450 people is estimated to have MS, while in Scotland it is one in every 300.
“There must be so many people like me who must feel abandoned by the system – waiting even longer than two years to get the help they need or who might not know what the right tests are they need to push for and where they can find information and support .
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Hide Ad“We need more awareness of MS and its symptoms for possible patients, loved ones and doctors – especially when Scotland has some of the highest rates in the world.”
The disease relentlessly attacks a person's ability to move, think and feel, stripping away their independence – meaning they require extensive physical and emotional support.
The condition is a chronic autoimmune disorder of the central nervous system, characterised by the destruction of myelin, the protective covering that insulates nerve fibres.
Multiple sclerosis occurs when immune cells attack myelin, leading to inflammation and damage, resulting in many possible symptoms including weakness, impaired coordination, vision problems and cognitive dysfunction.
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Hide AdThe exact cause of MS is unknown, but genetic and environmental factors may play a role.
According to the Multiple Sclerosis Trust, MS is two to three times more common in women than it is in men, “and some studies suggest that prevalence in women is increasing.
“The distribution of MS around the world is uneven,” the trust said.
“Generally, the prevalence increases as you travel further north or south from the equator.
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Hide Ad“Countries that lie on the equator tend to have extremely low levels of MS, whilst places closer to the Poles such as New Zealand, Canada and Scotland have particularly high rates”.
Almost 40 per cent of patients visit their GP five or more times before being referred to a neurologist, and many wait up to a year for a consultation.
Diagnosis is poor amongst older people, with symptoms like fatigue overlapping with other age-associated conditions.
Professor Klaus Schmierer, a consultant neurologist at the Royal London Hospital, said MS can be difficult to diagnose.
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Hide Ad“Firstly, the symptoms of MS are often mistaken for other illnesses or even the ageing process,” Professor Schmierer said.
“Secondly, and in part as a result of the above, referrals to neurology are often delayed, which can be very distressing for people with MS and their families.
“Yet with rates rising year on year, it has never been so important that people receive the diagnosis and treatment they need as quickly as possible – particularly in Scotland, which has some of the highest rates in the world.
“Any delays to MS treatment can do irreparable damage – which is why we need more widespread awareness of the symptoms, not only among clinicians but also potential patients.
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Hide Ad“Only then can we get closer to our goal for people in Scotland to live with MS yet hardly be affected by it.”
Diagnosis is made through a combination of clinical history and examination as well as investigations including magnetic resonance imaging (MRI) scans of the brain and spine, spinal fluid analysis and a variety of blood tests.
There is no cure for MS, but treatments aim to manage symptoms and slow the progression of the disease.
Dr Doina Ionsecu, the managing director of Merck Healthcare UK, which develops treatments for MS, said: “Treatment and care of MS has come such a long way in the past two decades, yet whilst most people with MS in the UK are now over the age of 50, there is little specific support for these patients on how to live well with MS at an older age.
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Hide Ad“At Merck, we have a long history of working in MS and have seen first-hand how important it is that people receive a timely diagnosis, a suitable treatment plan and the support they need - no matter what age they are.
“Health equity is a priority and we will be developing resources for older patients with MS, in partnership with healthcare professionals and patients, to try to bridge this gap in the coming months.”
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