April 12 2004
THE impact of multiple sclerosis destroyed the quality of Lorna McDevitt's
The mother, who has had the illness for more than 10 years, said one household chore would leave her so exhausted that she would have to rest, and cleaning her home in Irvine took all week.
Sometimes she had to leave the supermarket halfway through shopping, too ill to continue, and trips to buy clothes with her teenage daughter Claire were limited to one store.
"I also had problems with what they call cognitive fatigue," she said. "If one of the kids came home with a form about a school trip, to read it and take it in would be very tiring I would have to lie down and relax and read it two or three times. It makes you feel so stupid."
On the worst days, Mrs McDevitt was able to do nothing but rest.
The 47-year-old, whose father also had MS, said she first read about a drug called Naltrexone usually given to heroin addicts to block the effects of opiates on the internet three years ago.
A New York doctor had experimented with the drug in patients, including MS sufferers.
She decided to try the drug last April. "The first thing I noticed, lying in bed, was that the numbness in my back had improved," she said. Stiffness and fatigue also began to fade and a particular milestone she managed to complete her daughter's student loan forms, all 14 pages.
"This morning I have got up, worked on my computer, cooked and tidied up," she said. "In a short while we are going to go out. Prior to taking low dose Naltrexone I could not do anything before late morning."
It costs Mrs McDevitt £72 for a three month supply of the drug, even though heroin addicts are able to get it for free to help control their cravings.
The drug has not yet been licensed for MS sufferers, forcing them to buy it privately.
In Scotland, which has one of the highest rates of MS in the world, 45 patients are said to be buying the drug through Dr Bob Lawrence, a Welsh GP, for about £25 a month.
Dr Lawrence said he is supplying a total of 400 patients with Naltrexone.
Although GPs are still free to prescribe the drug on a "named patient basis", it is understood the doctor can be held responsible for adverse side effects.
Dr Lawrence said the dosage of Naltrexone taken by MS patients was so small that it had no "significant toxicity at all".
He said that once doctors saw the benefit their patients experienced on Naltrexone, they would be more inclined to prescribe it again.
He added: "It would be almost impossible to get the NHS to voluntarily accept this method en masse without demonstrable and absolute proof of its effectiveness.
"This means an expensive time-consuming trial that no-one seems prepared to do."
Mrs McDevitt along with other patients has launched a petition campaigning for urgent trials. The on-line petition has already received more than 2000 signatures.