IMAGINE mind-numbing tiredness, dizziness, a walk like a drunk and extreme clumsiness.

Imagine having countless medical tests — which can find nothing physically wrong.

Frustrating? You bet.

Jeanette Eames, of North Tawton, is just one of many thousands of people in the UK who have suffered the agony of knowing something is wrong — but not knowing what it is.

Last year, consultants at Exeter finally realised what Jeanette's problem was. She has Dystonia, a condition caused by the malfunctioning of the central nervous system.

Jeanette said: 'I found out officially what it was in August, although with hindsight I may have had it as far back as 1976, without realising it. Lots of little things happened which were never explained, but when you have all the information, it all makes sense.'

Her condition really began to 'kick-in' in October 2000. She was soon unable to walk any distance and one of her feet began to turn inwards at an alarming angle. Her whole body felt bruised and painful.

'I had so many tests done before the final diagnosis and basically it was the end of the road, I was getting quite desperate,' said Jeanette.

'I just wanted to know what the hell was wrong with me. Nothing came up on the tests, they came back negative because nothing shows physically. It was very frustrating.'

One of the difficulties for sufferers of Dystonia is that the condition can be intermittent. Jeanette, 37, said at first she would be fine for a week, then have a particularly bad day. As the condition worsened, the good days became more and more rare.

Things got so bad she was unable to continue working or driving — even walking is now a major challenge.

'I have to use a wheelchair or scooter. If I'm having a particularly good day and push my luck and force myself to walk more, I'll spend the rest of the day laid up,' said Jeanette, who has young children aged ten and seven.

'I can't even collect my daughter from school any more,' she said. 'I did go recently — I wasn't 100% but I really missed doing it.

'I knew I was going to pay for it but I so wanted to do it. I've got it out of my system now — for a while,' she said.

Jeanette said when she was diagnosed, she had no idea what Dystonia was and was grateful for the help and information she has received from the Dystonia Society.

It estimates there are some 38,000 Dystonia sufferers in the UK, and probably many more who remain undiagnosed.

Sometimes the condition is generalised, as in Jeanette's case. Others may suffer from neck spasms, Dystonia of the eye muscles, causing uncontrolled blinking, spasms of the jaw, speech or hand and forearm muscles — often called writer's or typist's cramp.

Sufferers may be born with the condition or it may be caused by damage to the brain, such as a stroke. It is exacerbated by stress and emotion.

People with Dystonia rarely recover permanently, although there can be periods of remission.

Although the condition is not life-threatening, it can have a devastating effect on the sufferer's life and cause upheaval at home.

Jeanette said it was a great relief finally to find out what was wrong with her.

'I often thought if people didn't know me they'd think I was a bit of a faker. I had good days when I could virtually walk, but what they didn't see was later on in the day, when I could hardly walk at all.'

She takes a drug, similar to an epilepsy drug, which enables her to walk a little and has lessened the pain she suffered, when even the slightest knock hurt.

She is determined to make something of the rest of life, given her restrictions.

'I want to keep my mind active. I'm reading books like they're going out of fashion — and I'd like to take up painting again. I don't know if I can because I get the shakes, but classes start in September and I'm determined to have a go.

'I also want to learn to use the word processor that's gathering dust!'

She is also keen on learning to become a counsellor, perhaps for the Dystonia Society which has been so helpful to her.

Jeanette, a positive and articulate young woman, seems remarkably positive about a condition which has caused such a huge change to her, and her family's, lives.

'I've always had a bright outlook. All right, so I'm stuck with it, but what's the point of going round with a miserable face?' she said.' I've just got to live within my limitations.'

l The Dystonia Society can be contacted on 0207 490 5671.