In my experience, people dread the thought of getting multiple sclerosis (MS) every bit as much as cancer. It's much less common - about one in 1,000 people in the UK get it, compared to one in 10 women diagnosed with breast cancer alone. Perhaps it's because people know there's a hope that cancer can be cured, while MS can't. Perhaps it's because it tends to strike so young - the average age of diagnosis is just 32.
MS causes a wide variety of symptoms affecting the nervous system, which can strike at any time. They include dizziness, numbness and tingling over parts of the skin, balance problems, blurred or double vision, muscle weakness and waterworks problems. Eighty per cent of people get the 'relapsing remitting' type of MS - between attacks of symptoms, usually lasting two to six weeks, they feel completely well. Over time, remissions between attacks may get fewer and shorter. In time, up to two thirds of sufferers will develop memory problems of some sort.
The state of MS
A recent survey of MS patients and their doctors reveals the full extent of the impact of MS. It also shows that we need to keep working to improve communications between doctors and patients.
One in five hospital specialists say they limit the discussions they have with MS patients to 'need to know' information, to protect them. Yet 90 per cent of people with MS want to know everything about their condition, whether good or bad.
Eighty per cent of sufferers said that MS affected hobbies and social activities. Almost half said it had an impact on their everyday activities, and three quarters said it made it harder (or impossible) to work.
But the survey has good news too. In the UK, nearly half of people with MS have access to a specialist MS nurse, who may have more time to discuss everyday concerns and how to cope with them. In the rest of the world, this figure is just nine per cent.
What causes MS?
MS is an 'autoimmune' disease - your body's immune system, which normally helps you fight off infection, turns on you and attacks the insulating sheaths around the nerves that carry messages inside, to and from your brain. The whole cause still isn't completely clear. We know genetics plays a part - one in five people with MS have a relative with the condition. But it's not the whole story - 99% of people with a parent or sibling with MS don't get it. We know viral infections may trigger the start of symptoms, and can often bring on relapses - but everyone gets viral infections and only one in 1,000 people in the UK have MS. It seems to be a complicated combination of 'nature and nurture'.
Vitamin D - is there a link?
The 'sunshine vitamin' may protect against MS - chillier parts of Scotland have up to twice the rate of MS found in England. Consider a daily supplement of 20 micrograms of vitamin D if you don't get much sun.
MS - what help is out there?
The NHS has made remarkable progress in providing help for all the physical, practical and psychological problems that MS sufferers face. Most hospitals have specialist clinics, with a team of healthcare professionals. Physiotherapists can help with strength and balance problems; occupational therapists with adaptations needed for the home; speech and language therapists with speech or swallowing issues; specialist nurses offer advice on medication and side effects; and counsellors can offer talking therapy.
MS treatments - what's new?
We have seen a lot of progress in recent years in 'disease-modifying' treatments, which cut relapse rates and can slow progression of the disability caused by MS. Beta-interferon and Copaxone® have been shown to reduce relapse rates by 30 to 40 per cent. Tysabri® and Gilenya® may cut them by 50-70 per cent. Now a new tablet, Tecfidera®, has also been approved by NICE, the medicines regulator. It has been shown to cut relapse rates and the chance of having symptoms in relapsing-remitting MS by almost half. Because not all medicines work for or suit all patients, the more medication options we have, the more hope.
With thanks to 'My Weekly' magazine where this article was originally published.
Disclaimer: This article is for information only and should not be used for the diagnosis or treatment of medical conditions. Patient Platform Limited has used all reasonable care in compiling the information but make no warranty as to its accuracy. Consult a doctor or other health care professional for diagnosis and treatment of medical conditions. For details see our conditions.