A local hospital told Linda Kerr the tingling sensation in her right hand was a trapped nerve and suggested she ignore it. She followed the advice. But while on holiday in Bulgaria in 1992, the thumb and index finger in her left hand went numb. As the vacation continued the numbness spread to the whole left-side of her body.
"Looking back, I must have been naive because I thought that it must be related to the trapped nerve," says Kerr (37) who, months later after a series of hospital neurological tests, was diagnosed with multiple sclerosis. Despite the devastating news, she stayed at work and maintained a hectic pace of life.
As the disease progressed, Kerr found her strength diminished. With no warning signs, she would collapse as her legs seemed to cave in. Under doctor's orders, she stopped working and rested.
Narrowly missing out on participating in the first trials of a new drug called Beta-interferon, Kerr was among the first in Northern Ireland to take the drug when it became licensed in 1997. After the first treatment, her hopes of remission began to fade.
"The injection zapped me, I couldn't even hold my head up or put the phone to my ear. I got worse and worse," she says.
Before the 14 1/2-month course of the new drug, Kerr could walk around her home in Rathcoole on the northern outskirts of Belfast. "Personally, I feel the drug accelerated the progression of the disease," Kerr says and she is now confined to a wheelchair.
She adds: "Now I might be a little more reluctant to try anything new. I think I will just keep waiting on the cure, and of course for Mel Gibson to come walking through my door."
But for others the drug has heralded a new lease of life. MS sufferer Barbara McMinn of north Belfast firmly believed she would be house-bound for the rest of her life, now she is making plans with her daughter Laura (13) to go on holiday for the first time since being diagnosed.
"She wants to go to Blackpool, I am thinking of somewhere a little quieter, like Devon," says McMinn (34). Diagnosed with relapsing-remitting MS six years ago, she had worked full-time and cared for her two young children, Laura and Neil. Six months after the diagnosis, her health deteriorated rapidly. Gradually she lost feeling in her right hand, became tired and needed a walking stick to get around at home.
"At first I thought it was all in the mind but then my legs would just go from under me when I was out shopping. People used to ask me if I was drunk. I never told anyone I had MS, not even my kids, I was too embarrassed," she says. Initial treatment involved regular steroid injections, which seemed to have no lasting effect.
On being offered the opportunity to try Beta-interferon, McMinn says: "I felt very privileged because it was so expensive."
Although she has a needle phobia, McMinn injects herself every other day either in the hip, thigh or stomach.
Since beginning treatment 23 months ago, her life has radically improved. "I have not had attacks, I can go out to the shops, visit my mum and look after my kids. Beta-interferon has given me back my confidence."
Years of medical research have yielded some salient facts about MS but doctors are the first to admit that many elements of the disease continue to baffle. MS, the most common disabling neurological disorder among young adults in northern Europe, is more prevalent among women that men, which experts attribute to differing hormone and genetic influences. Although MS is not an inherited disease, the probability for the offspring of MS sufferers to contract the illness is increased. But the precise reason which triggers MS, causing damage to the protective sheath surrounding nerve fibres in the brain and spinal cord, is unknown.
Black South Africans, Chinese and Indians are not prone to the disease; studies suggest that environment, diet, racial and genetic make-up have some bearing in determining the probability of contracting MS.
According to a recent detailed epidemiological study in Northern Ireland carried out by senior neurologist Dr Stanley Hawkins, 3,000 people in Northern Ireland have MS and one out of 200 women aged between 35-45 will get MS. Survey results indicated that there are more cases of secondary progressive MS than benign and relapsing-remitting MS. The highest levels of MS globally are found in the Orkney Islands, Scotland.
Dr Hawkins, a veteran of MS research, says new methods of diagnoses including MRI scanning, makes it imperative to have up-to-date records to monitor MS levels efficiently and provide adequate care services. His patients were the first in the North to take part in drug trials two years ago, which it was thought might alleviate symptoms.
The test results showed that the administration of Beta-interferon, which is a naturally occurring protein, brought a significant degree of relief to many MS patients. Licensed in the UK in 1997, the drug is currently prescribed through the National Health Service to 120 MS sufferers in the North, although efforts to increase availability are ongoing. The annual cost for each patient taking the new drugs is about £10,000 sterling. "It is certainly not a cure, it has not been shown to make people better but in cases of relapsingremitting MS it appears to reduce the number of relapses and slow the advance of disability," Dr Hawkins says. In June, the European Neurological Society in Nice, France will announce results of trials using Betaferon (amino acids coated with sugar) in patients suffering from more advanced MS. Around 30 per cent of patients currently using Betaferon develop antibodies reducing the drug's positive effects.
Michael Dineen, general manager of the Multiple Sclerosis Society of Ireland, hopes that within a year Betaferon's licence, at present covering only relapsing-remitting MS, will be extended to include advanced MS cases.
"Currently only one-third of MS sufferers in Ireland are eligible for the drug," he says but adds that the prospects of extending the drug's remit is giving hope to thousands more. Dineen says: "My wife, who has slow progressive MS, followed drug trials closely and is keen to try the drug when it becomes available on prescription."
Experts estimate there are 4,000 MS sufferers throughout Ireland but Dineen believes "information is not as accurate as it might be". The MS Society is drawing up plans for a broad epidemiological study, although financing the project is proving difficult.
He adds: "Accurate figures will provide a greater degree of advocacy, we will be able to say to the Government there are requirements in these areas, such as respite care and services and `that is your responsibility'."