TOP TO TOE:
Multiple sclerosis imposes limits you have to accept, says sufferer James Buxton, but that shouldn't stop you
Financial Times ; 10-Jun-2000 12:00:00 am ; 892 words
By JAMES BUXTON
The sweltering May day in a Hampshire garden was not likely to show me at my best. I suffer from multiple sclerosis and very hot temperatures make my legs weaker and less manoeuvrable, so the long flight of garden steps presented a challenge, on the way down and especially on the way up.
Later a cloudburst provided relief, taking the temperature down to a more comfortable level. But it brought another hazard: wet paving stones, potentially lethal to anyone who walks with two rubber-tipped sticks.
I was diagnosed as having MS in 1984 when I was 37. I had been worried about patches of numbness in my legs and feet and an occasional slight limp. But at first I could hardly believe, let alone accept, that I could be confirmed as suffering from a progressive disease for which there was and is no cure. It took a year or so to get over the shock and sadness.
MS is a disease where the body's immune system attacks itself, damaging the protective sheath of myelin around the central nervous system. Developing scar tissue or scleroses interfere with the transmission of messages to and from the brain. This can lead to a frightening array of symptoms, such as muscular weakness, poor co-ordination and balance, fatigue, speech and swallowing difficulties, blurred vision and bladder problems. MS usually strikes between the ages of 25 and 50 and afflicts nearly twice as many women as men.
But no two MS sufferers are affected in the same way and symptoms come and go and can disappear altogether. After diagnosis I began having two or three attacks a year of bad lameness in one leg. It was alarming but it got better in three weeks or so, assisted by prednisolone tablets, a form of cortisone.
After three or four years these attacks became rarer and the disease assumed its present pattern. Some symptoms are always present such as weakness in my legs and my bladder, but thankfully not in my hands or arms. The symptoms can vary in intensity from day to day, and even from minute to minute. But, sometimes, imperceptibly, they have got worse; whereas I can recall in 1987 struggling up Arthur's Seat, the 830ft hill in Edinburgh where I live, a walk now is more likely to be the 400 yards to the letterbox, on two sticks at a slow pace.
In medical terms, my illness has moved from relapsing and remitting to the secondary progressive type of MS. Of the 85,000 people in the UK who have MS, the MS Society reckons that 40 per cent have secondary progressive. About 25 per cent stay with relapsing and remitting where, in addition to accumulated disability, they suffer big fluctuations.
A third category is primary progressive, accounting for 15 per cent of sufferers, who never have distinct relapses and remissions but suffer steadily worsening symptoms. The fourth category is benign MS. Here people make a complete recovery from attacks that leave no permanent disability.
My MS restricts my mobility and is making me more dependent on other people - especially my wife. But I have a reasonable life. For 13 years until last summer I had a full-time job as Scottish correspondent of the FT. My capabilities were greatly enhanced by having a car with hand controls and automatic gears, and an orange parking badge. I now work as a freelance journalist.
Having MS requires acceptance. It is pointless trying to push yourself past the limits imposed by the disease but you should not stop making the most of what you are able to do. That day in Hampshire had its difficult moments but I would much rather have been there than sit at home.
Luckily I do not usually suffer from fatigue and if I feel weak when I go to bed I have recovered by next morning. I do not have the depression that is often a symptom. I sometimes wonder if my mood is unrealistically optimistic, for the likelihood is that I will eventually be restricted to a wheelchair (I already use one at airports).
There is no medication I can take for the disease itself, though I take pills for some of the symptoms. My approach is to organise my life carefully and fight the stiffness in my limbs with exercises and weekly physiotherapy.
I have tried complementary therapies, without success. I had hyperbaric oxygen treatment for a time but reckoned that if there was a small improvement it was far outweighed by the hassle involved. Recently I joined a friend who has MS in sessions with a spiritual healer; while she has improved significantly, I found it made me worse.
There is no scientifically validated cure for MS. The great hope of MS patients and of drug companies lies with treatment by beta interferon, a protein that may inhibit the work of the body's own gamma interferon in destroying myelin. Administered every other day or in weekly injections to mildly disabled patients who have relapsing and remitting MS, it reduces the number and severity of attacks. But it does not slow the progress of the disease.
Beta interferon made by Schering has also been licensed for treatment of secondary progressive MS; following a trial that showed it slowed the progression of disability by nine to 12 months and extended the time before patients needed a wheelchair. However, two subsequent trials, one by Schering and the other by Ares-Serono, did not fully confirm the earlier outcome.
Health authorities are presented with a dilemma by beta interferon because it costs Pounds 8,000 to treat a patient for a year to gain what many doctors consider only modest improvement. In my case, it is not clear if I would be eligible for secondary progressive beta interferon treatment and anyway my health authority does not allow it.
What everyone really wants is something that prevents MS from occurring
and repairs the damage it has done. But that seems a long way away.