The Courier & Advertiser (Fife Edition)
MS – the fight goes on
Although its causes remain a mystery, during Multiple Sclerosis Awareness Week the fight goes on to make life more manageable for those living with the condition, says Lorraine Wilson
HEN JULIENNE Beaumont feels what she calls the MS hug, she knows that a relapse is on its way. “I can always tell – half of my face will go numb. Then there is the ‘hug’ – the grip around a part of the body. When it first happened at my side, I thought I was having a heart attack. It was a tight grip, like an elastic band squeezing inside me just under my bust. Extremely painful.”
Despite this, when Julienne received a diagnosis of Multiple Sclerosis, her reaction was shock … but also relief. “At least I knew what was wrong with me,” she says.
For 20 years or so, Julienne had almost set up camp at her GP’s surgery in Kirkcaldy, with a long list of problems that appeared to be unrelated and were all able to be explained.
Four years ago, however, a numbness in her foot spread through both legs and eventually, for 12 weeks, she was completely numb from the waist down.
“At that point they did an MRI and a lumbar puncture and the results came back positive for MS,” she says.
Although most people are diagnosed in their 20s and 30s, she was diagnosed at 44. This isn’t unusual in MS, a neurological condition that is still incurable and affects every person who has it in completely different ways.
In Scotland that number stands at around 10,000 – the highest incidence rate in the world. There might be some environmental factors causing this, but there are also still many unanswered questions.
“This really is a relatively unknown condition,” says Becky Duff of the MS Society in Scotland. “It happens when the myelin sheath comes away from the nerve, causing damage. It can get progressively worse or remain unpredictable through life. It isn’t a fatal disease in itself but some people with MS will have a shorter life expectancy.”
Although the research has come a long way, no one knows for sure exactly why Scotland has such a high incidence of the illness.
“Research suggests that a factor could be Vitamin D deficiency through lack of sunlight,” adds Becky. “The further away from the Equator, the greater the incidence of MS. It’s extremely rare in Ecuador and Kenya. There’s a potential link between Vitamin D deficiency in pregnancy and childhood and a greater risk of developing MS in later life.”
There are various types of MS. The most common is Relapsing Remitting (Julienne’s diagnosis) where there will be periods of symptoms and periods without, but even then there will be lingering problems from the period of relapse.
There are also Primary Progressive and Secondary Progressive. The former is where symptoms gradually get worse from the start and Secondary Progressive follows on from Relapsing Remitting, where rather than the distinct periods, symptoms begin to get progressively worse.
Around 85% of people will initially be diagnosed with Relapsing Remitting, with most going on to Secondary Progressive.
“No two people have the same journey,” says Becky. “There can be problems with sight, balance, speech, cognitive issues, muscles, incontinence, numbness, pins and needles – anywhere there’s a nerve there can be a symptom.”
It’s easy to see then, why it can take such a long time for a diagnosis to be made. “Children can be diagnosed but it does tend to be people in their 20s and 30s … although it’s the nature of MS that it can happen at any time,” Becky continues.
There is also still no explanation why there are three times as many women as men develop MS – and no solid link to it being a genetic disorder.
“It’s incredible how far we have come in such a relatively short space of time, but research is ongoing. That’s what we fund alongside symptom management,” adds Becky. “Of course what we want is prevention or a cure, but we need to be able to make sure those living with MS have access to the right services for them.”
Twenty years ago there were no disease modifying drugs available but by the end of this year another three should join the choice of eight already available, and crucially two of those can be taken in tablet form rather than administered through self-injection.
For Julienne, the Fife support network is crucial. She had to give up work and due to fear of sudden onset of symptoms she doesn’t feel comfortable going out alone now: “Sometimes people can think you’re drunk,” she laughs.
However, she does volunteer for the MS Society and also at the Victoria Hospital in Kirkcaldy, raising MS awareness.
“I’m lucky, I have my husband, who is working, and a daughter. If you’re alone and can’t work, support networks like the Fife network are absolutely crucial. Even down to knowing the support that’s there from a specialist MS nurse,” she says.
Although a neurologist will make the diagnosis. MS nurses are the main point of contact for those who need support through relapse, want to talk about medication, or don’t know how to access services. For those who are isolated, says Becky, they need to know that they not alone.
The MS Society is launching the Treat Me Right campaign – which aims to make sure all those living with MS get the right treatment at the right time. With the right support, it is a condition that might restrict life but doesn’t need to stop it in its tracks.