'I used to have MS but now I don't'

A SUFFOLK man who has lived with Multiple Sclerosis for almost 26 years is today facing up to the fact that he may not have it after all, and could be treated with something as simple as an aspirin.

John Simper, 60, was diagnosed with MS when he was 35 but two months ago he found out that he could have a lesser-known condition called Hughes Syndrome, which is far easier to treat.

Mr Simper, of Playford Road, Rushmere St Andrew, who was involved with the motorcycle racing industry, said: “I haven't worked since I had my diagnosis because I am too tired and weak to do a full day's work.

“My legs are weak, I only have partial feeling in my hands and I suffer from poor balance and short term memory loss.”

Mr Simper went to his GP after reading about the syndrome. Blood tests were done which showed that he had Hughes but now has to go to St Thomas's Hospital to see how they might treat it and is currently waiting to undergo more tests to find out what treatment he needs but is philosophical about what the future holds.

He said: “I've got used to the idea of MS over the last 26 years. If they said to me tomorrow that I had still got MS and not Hughes Syndrome it would be disappointing but it would not really affect the way I live or the way I think.

“I've always been someone who wants what I want when I want it and I have not let my condition get in the way of that.

“I may find that they can ease the symptoms really easily but I may not. Who knows?”

Hughes Syndrome causes patients to have abnormally thick blood and suffer from clots, but many of its symptoms mimic those of MS, the progressive disease of the nervous system.

It was first identified by London-based Dr Graham Hughes in 1983 (the link with MS was not identified until 1993) and is still relatively unheard of but it can be identified by two simple blood tests.

Since he found out about Hughes Syndrome, through reading an article in one of his wife's magazines, Mr Simper has been campaigning tirelessly to raise awareness of it and has written to a host of celebrities to see if they will add their weight to his campaign.

He said: “I don't blame the doctors who first diagnosed me because Hughes Syndrome hadn't been discovered at that point, but I do wish that someone had contacted me since. It shouldn't have been left to me to find out.”

His ultimate aim is that everyone who is tested for MS is offered the Hughes Syndrome blood tests at the same time and that people with MS are called in for re-testing.

He said: “They estimate that between two per cent and ten per cent of MS sufferers could actually have Hughes Syndrome instead.

“Even if you take the lower figure that's 2,000 people, and based on the disability benefits that I get, that's almost £28m the government could be saving per year.

“If you factor in to that all the money that would be saved on drugs and care for people you could go along way to solving the NHS's financial problems.”

Kate Fitzpatrick, manager of the Hughes Syndrome Foundation, said: “Mr Simper is not alone. It is believed that there are up to 150,000 Britons with the condition but the majority of them don't know it.

“We are on the cusp of more awareness of it, but at the moment it is still relatively unheard of.

“The real problem is that a lot of GPs and hospitals don't know about it so people are not being diagnosed, and it can often be mistaken for a number of other conditions, including MS.

“It can be treated with simple aspirin or warfarin and the results are amazing. We have literally had people who have been in wheelchairs who are now able to walk around and go to the gym.”

People with Hughes Syndrome have abnormally thick or 'sticky' blood and are prone to clots.

Because the blood is so thick it often lacks oxygen, meaning the brain is deprived of oxygen and does not function properly. This is why many of the symptoms are similar to those of a neurological condition like MS.

It is not known why people get it, but illness or surgery are possible triggers.

It affects around one in 500 people and accounts for one in five recurrent miscarriages, as well as one in five strokes and cases of Deep Vein Thrombosis in young people.

Symptoms can include abnormal movements, memory loss, seizures, angina, blotchy skin and headaches.

It is treated with blood-thinning medication like aspirin, heparin or warfarin. One junior aspirin a day may be enough to make a difference.

For more information contact the Hughes Syndrome Foundation on 0207 188 8217 or see www.hughes-syndrome.org.

Aspirin gets its name from the compound acetylsalicylic acid (ASA) which was formulated by Felix Hoffman in 1897.

Recent research has suggested a possible link between long-term aspirin use and the prevention of breast cancer. One study suggested a 21 per cent reduction in breast cancer risk in women who had taken aspirin for a period of five to nine years.

Every year 50 billion tablets are taken worldwide, with Americans swallowing 58 per cent of the total.

At small doses, aspirin affects blood clotting. If you were to pinprick a person who had taken an aspirin, they would bleed for three minutes longer than someone who had not.

Regular aspirin use at low dosage could reduce the risk of fatal colonic cancer by up to 40 per cent.

Paramedics are advised to give an aspirin to any patient who has been suffering from chest pains for more than 15 minutes as a precaution against a heart attack.

While not yet conclusive, preliminary research suggests that aspirin may help to prevent certain forms of dementia. One theory is that Alzheimer's disease is caused by an inflammatory process in the brain. Taking an anti-inflammatory like aspirin four times a week might therefore help to prevent its onset.

SOURCE: www.saga.co.uk/health_news