It’s the most common cause of neurological disability in young adults, it has no cure, and it affects around 100,000 people in the UK.
Yet mention MS to a lot of people and the answers you’ll get will range from “Is that chronic fatigue syndrome?” to “Is that what Stephen Hawking has?”
The answers to both these questions is “No, it’s not” (that’s ME and Motor Neurone Disease, respectively).
That said, they’re not entirely wrong: one of the critical symptoms of Multiple Sclerosis is extreme fatigue, and MS is a condition that-like Motor Neurone Disease-affects the central nervous system.
We asked the UK’s leading MS charity, the MS Society, what you need to know about the condition on World MS Day (May 31).
Is there a misunderstanding of what Multiple Sclerosis is?
There does seem to be a general misunderstanding of how MS affects people; a survey of over 2,200 members of the general public by the MS Society found that almost half (49%) of the general public can’t name one symptom of MS and one in 10 (10%) didn’t know whether the condition was contagious.
Many symptoms of MS are invisible to others so while people with MS might appear to be fine on the outside, they’re often struggling with a number of uncomfortable symptoms.
Another survey of 2,000 people with MS by the MS Society found nearly three-quarters (73%) of people had been questioned by complete strangers for ‘appearing to be well’ and almost everyone (90%) said they were frustrated with people putting their fatigue down to ‘just being tired’.
Is there an average age of diagnosis?
Symptoms usually start in your 20s or 30s, but MS can affect people of any age. It affects almost three times as many women as men.
How long does a MS diagnosis normally take?
MS can be difficult to diagnose. There’s no single, simple test that can tell whether someone has MS, and it can only be diagnosed by a neurologist. Some people can be diagnosed fairly quickly while others can experience symptoms for many years before they receive a diagnosis.
How many MS sufferers are there in the UK?
There are over 100,000 people living with MS in the UK.
What tend to be the main symptoms of MS?
MS is a very complex condition and symptoms can vary a great deal from person to person. Most people won’t experience them all, and certainly not at the same time.
Common MS symptoms include:
• vision problems
• problems with walking, balance and co-ordination
• muscle stiffness and spasms
• bladder and bowel problems.
Fatigue is just one of the many symptoms of MS that are invisible to others, yet can impact considerably on someone’s daily life. MS is also unpredictable, which can make planning and accessing the right care difficult.
Can people with MS still live a ‘normal’ life?
While the impact of MS on someone’s life cannot be underestimated, people with MS continue to live their lives to the full. Although symptoms of MS can make some areas of life difficult, the MS Society is working hard to make sure people with MS have the support they need to live full and independent lives.
There’s a general assumption that everyone with MS will end up in a wheelchair, is that true?
While the progressive form of the condition can lead to an accumulation of disability which can lead to mobility problems, everyone’s MS is different so it’s not true that everyone with the condition will eventually use a wheelchair. In fact, the majority of people with MS will not become severely disabled
What advice do you have for someone newly diagnosed with MS?
Being diagnosed with MS can be a scary and confusing time and many people can feel isolated. The MS Society is here to make sure people do not go through it alone.
People can access information and support at the MS Society’s website and connect with other people going through similar experiences by joining the online forum. The society’s free helpline is available on 0808 800 8000.