Understanding multiple sclerosis
Here's everything you need to know about Multiple sclerosis (MS)—a chronic “auto-immune” condition and one of the most common causes of disability in younger adults.
Symptoms of MS are “as unique to the individual as their own fingerprint”, says advocate for MS awareness Jack Osbourne, but there are some statistics, both challenging and cheering, that are relevant to all and which can aid everyone’s understanding.
Multiple Sclerosis by Numbers
According to the MS Society, over 130,000 people are living with MS in the UK. Around one in every 500 people in the UK has MS, and each week 130 people are diagnosed with MS.
There are 3 main types of MS. The most common type is relapsing-remitting MS, in which symptoms come and go in “flares”. Some people go on to develop permanent disability and are diagnosed with secondary progressive MS. A smaller number of people have primary progressive MS, where symptoms worsen from the onset.
In all types, the underlying problem is with the layers of fat that insulate nerve fibres. Necessary to promote the conduction of electrical impulses from nerve cell to nerve cell, fatty coating is lost in MS as parts of the brain and spinal cord become inflamed. Impulse conduction is impaired.
MS most commonly begins between 20 and 40 years of age, although it can begin at any time. It is universally more common in women than men.
The symptoms of MS depend on which parts of the brain and spinal cord are affected, which is why symptoms vary so much from person to person. Fatigue is one of the most common and debilitating symptoms.
The Cochrane Library, in one of its reviews on MS, lists 9 typical clinical features including visual loss, double vision, motor weakness, spasticity, ataxia, tremor, sensory loss or impairment, bladder dysfunction, and cognitive impairment. “The course of the disease is so variable that some people become significantly disabled in a very short time,” they write, “but others can live their entire lives with minimal or no disability.”
There is currently no cure for MS. However, drugs known as “disease-modifying therapies” can help slow progression, prevent relapses and reduce their severity. Fourteen such drugs have been approved for use by the NHS in the UK, including Copaxone and Avonex, which both help avert immune attacks on the nerves. Several more treatments are in development and being trialled.
Scientists are testing whether a common diabetes drug could help prevent progression of disability in MS by protecting nerves. There are hopes that the drug could be available within five years, though caution and more research is needed.
In October 2019, the MS Society launched the “STOP MS” Appeal, aiming to raise £100 million for MS research, to “revolutionise treatments and change the course of MS for everyone.”
“Whether you’re looking for advice about living with MS, information about symptoms or just someone to talk to who gets it,” says the rapidly growing Shift.ms social network. With 15,900 followers on Twitter and over 35,000 members, it supports and connects people with MS across the world. Topics discussed include symptoms, diagnosis, treatments, day-to-day challenges and, currently, COVID-19!
Mark Webb, who lives with advanced MS, is raising funds for Shift.ms via a “Lockdown Virathlon”. He recently celebrated a record (for him) freestand (6.5 minutes) and is aiming to “shuffle 2km in stints of ten metres, rugby wheelchair roll at least 20km based on 200 metres a day and bicep curl 25 tonnes” for the cause. He has raised over £3500 to date, and over £15,000 over the years for MS charities.
He is also taking part in research to test whether the cholesterol-lowering drug simvastatin may slow progression of secondary progressive MS.
In wheelchair rugby, players compete in teams of four. Mark is a keen competitor, blogging about his experiences.
“One of the many things I love about this sport and the club I’m with is it is totally non-judgemental. And even better? Half of the guys and gals I play with, I have no idea what illness or injury or condition they have. It doesn’t matter. We don’t talk about it. We laugh and we fight and we shout and we compete. Glorious, sweaty glorious!”
The team at Shift.ms have set up the “Buddy Network”, connecting someone newly diagnosed with MS with a buddy to help them come to terms with their diagnosis and the isolation that this can bring. In so doing, the words of G K Chesterton in The Man Who Was Thursday may ring true:
"There are no words to express the abyss between isolation and having one ally. It may be conceded to the mathematician that four is twice two. But two is not twice one; two is two thousand times one."