IN JANE Sinski's home pride of place goes to a striking metal sculpture of a dancer. The tall black figure with outstretched legs and arms was bought while Jane and her husband Alex were living on an Army base in Germany and reminds her of when she was a full-time professional ballet dancer.

"I went to ballet school and then joined a company, performing for schoolchildren. It was part of a theatre-in-education project. I loved it," says Jane, who lives at Middleton St George, near Darlington. That was more than 20 years ago. Now Jane, aged 41, is a mother of two young children.

And while Jane still treasures the sculpture, dancing is now only a distant memory. For the past six years she has had multiple sclerosis, a crippling disease of the central nervous system, which can cause a wide range of disabilities.

The first signs that there was a problem happened while she was in Germany. "Just before we got married I got a few problems with my peripheral vision," says Jane. "It was weird, but the optician and doctor just put it down to stress."

Three years after she married Captain Alex Sinski - who now works as a practice manager for a Shildon GP - she had her first child, Victoria. But before her daughter was born in 1990, she had problems with numbness in her leg.

She remembers that the initials "MS" were first mentioned by a doctor who walked away from an examination couch and said he doubted whether it was the incurable disease. "I remember laughing and saying I'm jolly glad about that," she says.

Things stayed much the same until her second child, Joseph, was born.

"Four weeks after the birth my legs felt like there were bricks on the end of them. I saw the doctor and plucked up the courage to say I thought it might be MS."

Jane, who by that time had moved to the North-East, had read up about the disease and realised the symptoms seemed to fit.

Finally, doctors at Darlington Memorial Hospital and South Cleveland Hospital confirmed the diagnosis she feared. For a former dancer, the prospect of being slowly crippled by an unpredictable major illness was terrifying.

"There are no words to describe the shock - no, even that does not begin to describe it. I am one of the 'lucky' ones, having relapsing-remitting MS, but even that is just so awful I cannot begin to put it into words," she says.

As MS sufferers will tell you, the disease affects everyone differently. In Jane's case it is mainly a weakness in her right leg and left hand. "I started having regular relapses. There were days when it took me all my time to get to the kitchen. Getting to the end of the drive was a nightmare."

Jane discussed the possibility of trying the drug beta interferon - currently the subject of a bitter dispute between the MS Society and the Government's drug assessment agency, the National Institute for Clinical Excellence (Nice) - but was initially put off by the prospect of flu-like side-effects. "I suppose I chickened out," she says. "The kids are very lively, particularly Joseph, and I didn't want to feel as if I had flu all the time."

But after a serious relapse which left Jane feeling she didn't want to get out of bed for a month, she asked whether she could have the drug, and says it's the best thing she has done since she was diagnosed.

"After about eight weeks I suddenly starting feeling much better," she says. "The energy which had been missing was suddenly there again."

Simple things like going supermarket shopping and getting out of the car and meeting the kids from school were possible again.

"Before beta interferon I used to fall asleep in the afternoon. That didn't happen any more, I got my life back," says Jane, who feels so strongly about the benefits of beta interferon that she decided to write to Health Secretary Alan Milburn to plead with him not to restrict NHS access to the drug.

Back in June, Prime Minister Tony Blair told the House of Commons: "Nobody who gets the drug now will be denied it."

But after studying the available evidence about the drug, NICE has provisionally decided that beta interferon should not be generally available on the NHS. A final verdict is expected next month and it is likely to be accepted by Darlington MP Mr Milburn.

Jane feels strongly that the drug should at least be offered to MS sufferers, because the benefits are so clear for her. In her letter to Mr Milburn, Jane described the difference it has made to her life: "I had so many relapses I was eventually prescribed it, starting January 2000. What a New Year that was for me and my family. I had so much more energy. Maybe, just maybe, I would be able to keep myself well until 'that cure' comes along.

"Losing the use of arms, legs, hands, etc, apart from being depressing for me, must be terrible for my husband and family."

The news that NICE had provisionally come out against beta interferon horrified Jane.

"You may as well have stabbed me in the back," she wrote. "How dare someone sitting behind a desk in a nice cosy office be able to make such a decision. Had that person actually spoken to anyone with MS who had benefited from the drug? Please can you tell me if this is going to be taken away from me, and stop me waking each night in panic?"

In the last paragraph of her letter - sent to the House of Commons on September 8 - Jane concludes: "I do appreciate the high cost and I do understand that it does not work for everyone, but for those of us who do benefit from it, it is truly amazing."

A spokeswoman for NICE said: "NICE is aware that there is often speculation regarding the possible outcome of its technology appraisals. In fairness to all parties, it is our policy not to comment until the process is complete and we have issued our guidance the NHS. The process we follow for our technology appraisals is widely published and takes around 12 months to complete."

The process allows submissions from manufacturers, groups that represent patients and professional organisations, and also provides for appeals should they be required. So far NICE has received eight appeals against its provision guidance on the use of beta interferon for MS.

An independent appeal panel is due to consider the appeals today and interested parties will be informed of the outcome as soon as possible.

"Depending on the outcome of the appeal the earliest the Institute could issue guidance on this technology is mid-October," the spokeswoman said.

If Tony Blair sticks to his promise not to take the drug away from those already using it, Jane will sleep a little easier. But she's still worried for the future, for the thousands who will be diagnosed with MS and who might not have the choice.