Page last updated at 23:36 GMT, Saturday, 19 July 2008 00:36 UK
Living life with multiple sclerosis



Elizabeth Quigley

By Elizabeth Quigley
BBC Scotland

It was January 2000 and I'd just started a new job, my dream job as political correspondent for BBC Scotland.

I was very busy, working long hours, so I didn't have much time to pay attention to this strange tingling in my face, but the tingling grew until eventually everything to the left was tingling and pins and needles, and everything to the right was fine.

I convinced myself the problem lay in my wisdom teeth and I'd have to have them extracted: a prospect that terrified me.

So, I went to my GP, sure I was wasting his time, and that he would send me to the dentist. He didn't. Instead he made me an appointment with the neurologist at the Southern General Hospital in Glasgow for the next day.

Despite the speed of the appointment, I didn't realise the seriousness of the situation.

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Extract from the documentary

The neurologist did a few tests, asked me to move my legs about, and examined my face. He said: "I think it's inflammation of the nerves, but to make sure we should get an MRI scan done, and we'll do that tomorrow."

I still didn't think any of this was a big deal. I went along for the MRI scan and was called in for diagnosis.

I remember sitting in the waiting room and as I was getting up to go across, feeling a complete fraud, and this lady said to me as I was walking away, "you've got nothing to worry about, you're very healthy".

And I walked away past her along to the neurologist's office thinking you're right, I've nothing to worry about, I'm a complete fraud, what a waste of time.

MRI scan

I went in and sat down opposite the neurologist, noticed there was a nurse there as well, which struck me as a bit strange, but I didn't really think too much about that.

And then the neurologist said: "Yeah, the MRI scan that has confirmed that it is inflammation of the nerves". And I'm thinking, "fine, well you knew that already apparently".

But the shock hit me when he added: "And that is eh multiple sclerosis."

Back then I didn't know anyone with multiple sclerosis, no-one in my family had the disease, and it wasn't an illness I knew much about.

But since, I've learned Scotland is believed to have the highest rates of multiple sclerosis in the world.

map

About 10,500 - or one in 500 people here - has MS.

Their symptoms range from the mild and hidden, to the more severe.

For me, eight years ago it was a tingling in my face, now I get tired more easily and sometimes have to use a stick to walk.

In terms of the progression of the disease, the most frustrating thing is not knowing what the future holds. MS is not something I think about every minute of every day, but it is something I've had to face while making a BBC documentary. I'm determined to find out why Scotland has such a high rate of the disease.

Whenever I mention the statistics to people the immediate response is always the same - Why? Why is that? Well the simple answer is - no-one knows.

As a journalist, it's annoying not to be able to find a satisfactory answer to that question and as someone living with MS it's extremely frustrating.

Building blocks

I wanted to delve deeper, and that's why I've spent the last few months investigating the disease for the documentary "Scotland's Hidden Epidemic: The truth about MS", to be broadcast on Wednesday, July 23, at 2245 BST.

My journey to find out about this curious connection between MS and the country I love, where I was born and grew up is what this programme is all about.

I've travelled to Orkney and Canada, interviewed world leaders in the study of MS and met other people living and coping with MS just like me who are keen to find out why it's so common here.

MS can often quite literally be mapped along lines of latitude. It's more common the further north you travel from the equator - and lack of sunlight and Vitamin D are all factors. Another theory is that a virus triggers the onset of the illness.

And it looks like it's probably a combination of all these things - a combination of building blocks - building up to MS.

Nova Scotia
Elizabeth Quigley took her investigation to Nova Scotia

But these are not the only factors in explaining why and where MS occurs.

Genetics seem to play a role in all this. Dr Jim Wilson of Edinburgh University has just launched a major study looking at MS in the Northern Isles. Orkney and Shetland are widely believed to have the highest rates of MS on the planet.

Dr Wilson wants anyone with MS, whether an Orcadian living at home or away, to get in touch.

So, could there be a Scottish gene, or genes? Could MS really be something we Scots have taken around the globe over the centuries? It's a startling thought, and one which I investigate in the documentary.

It's been tough at times. MS is a disease I have, but not one I think about every minute of every hour of every day. But it's also been fascinating, and inspiring.

And, however the mystery tour of my MS ends, finding a cure or even some answers as to why it's so common here, would definitely be a very good ending to my story of MS.

Elizabeth Quigley's investigation, "Scotland's Hidden Epidemic: The truth about MS", will be broadcast on Wednesday 23 July, on BBC One Scotland at 2245 BST.

MULTIPLE SCLEROSIS AROUND THE WORLD

Estimates by national MS charities

Country Number of people with MS Prevalance (people with MS per 100,000)
UK 85,000 143.8
Sweden 12,000 134.8
Ireland 4,500 125.0
Denmark 6,000 112.0
Canada 35,000 111.0
Iceland 285 105.1
Germany 110,000 99.0
Finland 5,000 98.0
Czech Republic 10,000 97.1
Netherlands 15,000 94.9
Luxembourg 400 94.1
USA 250,000 91.7
Italy 50,000 88.2
Belgium 8,900 87.5
Norway 3,800 86.4
Austria 7,000 86.4
France 50,000 84.9
New Zealand 3,000 81.3
Israel 4,500 80.4
Poland 30,000 77.1
Spain 30,000 76.7
Hungary 6,600 65.0
Australia 12,000 63.8
Estonia 725 51.0
Portugal 5,000 50.5
Cyprus 350 46.7
Greece 5,000 46.7
Turkey 30,000 46.4
Bulgaria 3,200 39.3
Romania 7,500 33.4
Argentina 5,000 13.6
Mexico 8,000 8.1
Libya 290 5.9
Brazil 7,000 4.0
Japan 5,000 4.0
South Africa 1,500 3.5
Hong Kong 50 0.9
Taiwan 175 0.8
Zimbabwe 50 0.5



SEE ALSO
Dismay over MS treatment decision
11 Dec 06 |  Scotland
Gene found that helps combat MS
02 Oct 06 |  Health
Rowling gives boost to MS centre
19 Apr 06 |  Edinburgh, East and Fife
Multiple sclerosis
05 Jun 06 |  Medical notes

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