MS won't stop me living life
WALKING along the Royal Mile to work one morning Lesley-Anne Johnston was shocked when a boy gave her a stare before announcing to his mum that "that woman" was drunk.

It was the moment that she knew she would finally have to start using the walking sticks she had been given to aid her as her body was increasingly crippled by multiple sclerosis.

Suddenly she realised that the sticks would at least allow people to understand that the cause of her stumbling or slurred speech wasn't a drink problem but a serious neurological disease.

But since she made that difficult decision four years ago, life has become both easier and harder for the 36-year-old.

For while sticks, walking frames, wheelchairs and medication all help her to retain her independence, the pain and fatigue she suffers have forced her to quit her much-loved job as an educational welfare officer.

And she has also taken the heartbreaking decision not to fulfil her dream of having children.

Yet Lesley-Anne and women like her could, researchers believe, hold the key to solving the puzzle of just why MS strikes - bringing hope of a cure.

It has long been known that Scotland has the highest rate of MS in the world, with an estimated 10,500 sufferers.

And new research in Canada suggests that rates there are rising in women rather than men, prompting scientists to speculate that the same may be happening here.

Which is why the MS Society Scotland has just launched a Scottish MS register to create a database of every person with the condition in Scotland in order to try and find out what the genetic or environmental causes might be.

Lesley-Anne is among the thousands who will be asked to support the project by providing details about themselves and their condition to help scientists find better treatments and ultimately prevent MS altogether.

Sitting in her Craigentinny Road home with a stick by her side, Lesley-Anne laughingly describes herself as an "ideal candidate" for MS, saying: "I've had all the triggers which they think can cause MS, from stressful situations [a marriage breakdown in her early 20s] to serious illness - I had glandular fever when I was 16.

"But they don't know exactly what causes it. Everyone wonders why and how MS happens. I think the register is really important.

"I'm not convinced it will have a massive effect on my MS but it could help others."

Shivering involuntarily, something she shrugs off as "just a tremor", she adds: "My uncle and I both have MS and I wonder if my two nephews [aged five years and nine months] might get it too."

But it is not just the fear of passing on the disease that led her to decide against having her own children.

She says: "Personally I feel that I can't have children because it wouldn't be fair to them. Even if I could get over the fact that I wouldn't be able to run and play with them, I would know that eventually they would be looking after me.

"It has been a huge issue for me. All I have ever wanted in life is to get married and have a family and there is no physical reason why I couldn't still have children.

"I was sad making that decision but even though I have met someone since, I haven't changed my mind. I have seen what MS can be like in the later stages, not just with my uncle, who is now in a nursing home, but with a lot of other people too."

The first sign that anything was wrong with Lesley-Anne came in her early 20s when she slipped going into a pub in Dundee and dislocated her back.

Forced to stop work for more than a year and undergo surgery she then went to university to study English, psychology and philosophy. During the course she started to suffer stabbing pains.

By the end of the four years she was only getting two hours' sleep a night and was so exhausted that she had to take taxis to travel the mile from the halls of residence to her lectures.

Although she was in such pain, she was less worried than she might have been because she had been told that she might need another operation. But after moving to Edinburgh she was referred to the pain clinic at the Western General Hospital where an MRI scan revealed that she had MS.

She says: "I remember when the doctor said he was sorry to tell me I had MS, I was so relieved because I didn't have cancer or any terminal disease. I wasn't phased by MS, it was a condition I knew about and could deal with."

After her diagnosis, in 2001, she realised that the poor memory and sight problems she was experiencing were part of the disease.

For the past three years or so she has taken the drug beta interferon, which has cut her relapses from two a year to just two in three years. But it was not enough to save her job, and after quitting just over a year ago she believes she will never work again.

She says: "I was heartbroken. I loved my job and I miss it to this day. But I was missing a lot of time. I might be off for three days, a week or sometimes a month. That's the whole thing with MS, you just don't know how you will be.

"I had no quality of life either. I had to get up at 5am to roll across the floor and do exercises just to get my body ready for work at 8.30am, by which time I already felt like I had done a day's work. When I got home I sometimes didn't have the energy to cook myself dinner so I would go without. I'll never be able to work again because MS is so unpredictable."

She remains unswervingly positive, however, crediting her sense of humour for getting her through the bad days.

For the past year or so she has filled the gap left by her job by volunteering for the MS Society. And earlier this summer she amazed even herself by completing a disability fundraising challenge along the West Highland Way, partly on foot and partly on a special scooter.

"Ridiculous" as it might seem, she says, she is content with her lot. "Obviously I'd like the MS Society to find a cure for the disease, but personally I just want to stay the way I am now," she says. "I've been through so much rubbish in my life with illness, both me and my family.

"So although I've got MS I never really think about it. I am in a really happy place in my life now."

For more information about the register contact Claire Kennett at MS Society Scotland on 0131-335 4073 or via email at claire.kennett@mssocietyscotland.org.uk