Caroline McLoughlin, 43, faces growing disability and confinement to a wheelchair unless she can have interferon-beta, which has been shown to slow the disease's disease. Only 1,100 of the 10,000 sufferers in Britain judged suitable for treatment with the drug (according to Department of Health guidelines) are receiving it because of doubts about its effectiveness and worries about its cost - pounds 10,000 per patient per year.
The case highlights the pressures on the NHS caused by expensive new drugs. Two studies in The Lancet medical journal confirm that the drug delays progression of the disease, but some health authorities still refuse to pay for it.
One study of 560 patients in nine European countries found that the drug reduced the number of times patients relapsed by a third. In a study of 718 patients with the disease more advanced, the drug delayed worsening of the symptoms.
Mrs McLoughlin, from Nottingham, said that without the drug she feared becoming rapidly unable to care for her two sons, aged 13 and nine. "It is a big question-mark hanging over you. You know you are going to have another relapse but you don't know when. The uncertainty is horrible and each time it happens you are left a bit more disabled. If I could get interferon-beta it would largely take that uncertainty away."
She discovered she had MS after developing a creeping numbness which left her unable to cook, walk or drive.
"It started in my feet and gradually spread through my body until I was completely numb from the neck down. It was an incredible shock to have it confirmed as MS. All I could think of was that I wouldn't see my kids grow up."
Her shock turned to anger when she discovered that although her type of disease made her an ideal candidate for treatment with interferon-beta, there was no money for it. The pounds 200,000 allocated to the drug in Nottingham was enough to fund only 18 of the 100 patients judged able to benefit from it.
Mrs McLoughlin said: "I was being told there was a drug that could help prevent me being in a wheelchair but the health authority did not feel it was sufficiently important to pay for it. I decided to fight not just for me but for the 80 others who are not getting it."
She has bombarded the chief executive of Nottingham Health Authority with letters demanding increased funding. Her specialist, Professor Lance Blumhardt, consultant neurologist at Queen's Medical Centre, Nottingham, and an investigator in one of The Lancet studies, said rationing of the drug was "inexplicable" when it could prevent the disease leading to inflammation of the brain causing irreversible damage. "It is the first drug to work on MS in 150 years."
In the UK 1.5 per cent of MS patients get the drug, compared with 3 per cent in Turkey and 15 per cent in Australia.
A spokeswoman for Nottingham Health Authority said funding for interferon- beta would be reviewed, adding: "Any decision we make has to be taken in the context of all developments in medicine."Reuse content