Leading the way in a global battle to beat MS

Multiple sclerosis affects far more women than men, and more Scots than any other nationality. Will new research tell us why? 

By Fiona Russell

For Surinder Saroya, even the simple tasks of filling a glass with water or chopping an onion require enormous concentration and effort. Negotiating a doorway often results in a bruise for the 38-year-old from Glasgow, while a trip to the shops or a short walk along the beach can cause such fatigue that she becomes bed-ridden for several days.

But at least Saroya now has an explanation for symptoms that she believes started in her childhood, including poor balance and coordination, tiredness, sight, hearing and respiratory problems and aching muscles and joints. Three years ago, the busy career woman was diagnosed with multiple sclerosis.

“The disease has had a huge affect upon my life. When I was diagnosed I thought it was the end of my life and that I was suddenly going to die,” says Saroya. “I had to have a long period of readjustment. I took a look at my life, at all the stresses, and I tried to make sensible changes.

“Despite all of this, I find I can’t travel far or cope with noisy places. I have had to stop working full-time and I have also moved to a new, more manageable house. I still do get very, very tired and sore and my lack of coordination is increasingly difficult, even with tasks like making a cup of tea or a simple meal.”

Saroya’s daily struggles are typical of thousands of people across Scotland. Figures estimate that 10,400 people – one in 500 – are affected by the progressive neurological condition MS, of which the highest proportion are women. In fact, the Scottish incidence of MS is the highest compared to every other country in the world.

But the full scale of the disease might still be revealed. Later this year, a new register will begin to collate the exact number of MS cases in Scotland. “Unlike other countries, for example Denmark and Canada, where there has always been a register of people with MS, Scotland has no such record,” says Dr Lee Dunster, head of research and information at the MS Society.

“However, scientists are now recognising that Scotland would make an extremely good case study for research into causes of the disease. It is almost the perfect capsule because the country is a manageable size and the number of cases is so high.

“By the end of the year, it is hoped that a register will begin to collate the background of every MS case. This is bound to provide invaluable research material for the future.”

For more than 60 years, scientists have been working to find a cause of MS. It is known that the illness is more prevalent in countries that are located at the furthest points from the equator, such as Canada, Scandinavia and Britain.

“Migration studies in the 1950s and 1960s also revealed that a determining factor for being affected by MS appeared to be the location of residency before the age of 15, or puberty,” says Dr Dunster. Various other theories have focused on childhood contact with dogs, hormones, viruses, geography, vitamin D deficiency and the month of birth.

“But in recent years, there has been a stronger strand of thought that points to MS being caused by two components in combination,” says Dr Dunster. “To start with, a person requires a genetic susceptibility to MS, then some environmental trigger is needed for the disease to manifest itself. This trigger is now the focus of much attention, and research is looking at, in particular, sunlight and geography.”

Curiously, two recent studies have shed new light on the gender imbalance of MS cases. While the traditional belief was that MS worldwide affects twice as many women as men, it’s now thought that the ratio could have almost doubled in the past six decades. While the figure for women has been growing since the 1940s, the proportion of men with MS has remained static.

Last month, an American study at the University of Alabama reported that the rate at which females are affected by MS compared to men is four to one, while another carried out in part by University of Oxford academics on Canadian data in 2006 concluded a ratio of 3.2 to one. For scientists this represents another vital line of research. Last week, Dr Gary Cutter, a professor of biostatistics and author of the American study, told The Herald: “We don’t yet know why more women are developing MS than men but we do need to ask questions about what women do differently to men, such as use of hair dye and use of cosmetics that may block vitamin D absorption.”

Logically, believes Professor George Ebers, co-author of the Canadian study and part of Oxford University’s department of clinical neurology, the focus of such research should be Scotland “since it is the country with the highest incidence of MS in the world”.

This point is seen as particularly poignant to Mark Hazelwood, director of MS Society Scotland. “We’ve always known that there is something going on in Scotland that causes this particularly high rate of MS, but without accurate statistics it’s difficult to explore the issue further.

“It could be, for example, that there are more cases of MS in the north of Scotland or the south, or geographic pockets where more women have MS. That’s why MS Society Scotland has been working with the NHS and neurologists across the country to set up this very important register.”

Now that Saroya has had time to come to terms with MS, she has started to question why the disease has affected her. “No-one else in my family has MS and I can only think of a few contributory factors,” she says. “I know that childhood location is important and, while I have Indian parents, I have always lived in Britain. I spent the first 12 years of my life in England before moving to Scotland. I also believe that stress has played a huge role. I have had a very stressful life and until I stopped work, that caused great stresses, too.

“It is unfortunate that Scotland records the highest number of cases of MS, but it is great news that this country could become a focus for further research into this disease. Knowing how the figures stack up, particularly among women, does make me wonder what preventive measures I could have taken.”

Multiple sclerosis: the key facts of an unpredictable illness

• MS (multiple sclerosis) is a complex disease of the central nervous system which impairs the brain’s ability to transmit instructions to the muscles. It can affect different parts of the body, to widely differing degrees. In most cases, the symptoms both increase in number and become more severe over time. There is currently no cure for MS, but research is ongoing.
• Symptoms include visual impairment, numbness, fatigue, mobility problems, muscle and joint pains, tremors, bladder problems, mood swings, respiratory problems and poor concentration.
• There are four types of MS:
  Relapsing-remitting MS
  Most people are diagnosed with relapsing-remitting MS. This is when there are periods of relapses (a flare-up of symptoms), followed by remissions (periods of recovery). Relapses are unpredictable. They can last for days, weeks or months and vary from mild to severe. During a relapse, there could be evidence of new symptoms, or a recurrence or worsening of previous symptoms. During remission, symptoms can disappear completely, though sometimes people make only a partial recovery.
  Secondary-progressive MS
  Most people who have relapsing-remitting MS later develop a form known as secondary-progressive MS. This type of MS is identified when the condition becomes steadily worse, and the disability progresses, for a period of six months or more, whether people continue to have relapses or not.
  Benign MS
  If you have a small number of relapses followed by a complete recovery, you may be described as having benign MS. It is only possible to make a diagnosis of benign MS once you have experienced little or no disability for a period of 10 to 15 years. However, a diagnosis of benign MS does not guarantee that a person will be free of problems. A relapse may occur after many years.
  Primary-progressive MS
  With primary-progressive MS, symptoms steadily worsen, resulting in a continued progression in disability. In this case, there are no distinct relapses and remissions.
• For further information, visit www.mssocietyscotland.org.uk or call 0808 800 8000.
• http://www.heraldscotland.com/leading-the-way-in-a-global-battle-to-beat-ms-1.839957