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Last Updated: Tuesday, 22 August 2006, 09:30 GMT 10:30 UK
Man with MS hopes for a reprieve
Interferon injection
Aspirin or injected heparin can help control Hughes Syndrome
A former motorcycle racer diagnosed with multiple sclerosis (MS) 26 years ago believes he has been saved from ending his life in a wheelchair.

John Simper, 60, from Ipswich, is convinced he has been suffering from Hughes Syndrome which thickens the blood and slows down the brain.

This condition, discovered in 1983, mimics MS but can be treated with blood thinning drugs or aspirin.

Mr Simper has now started a crusade to make the condition more well known.

He believes other people who have been told they have MS may have Hughes Syndrome.

It could save the government millions of pounds on care and drugs if many people diagnosed with MS have Hughes Syndrome instead
John Simper

More than 150,000 people in the UK have the condition, which also causes recurrent miscarriages and chronic migraine.

"When I first heard about it I contacted my doctor and he had never heard of the condition," he said.

People with Hughes Syndrome suffer abnormal movements, dizzy spells, short-term memory loss, headaches and angina.

For more than a quarter of a century Mr Simper has been in fear of ending up in a wheelchair or even dying.

'Wary of developments'

Mr Simper said that his problems began after he was seriously assaulted and knocked out in 1980.

He had a legacy of injuries to all parts of his body from crashes as a motorcycle racer.

"The tests for MS are a matter of eliminating other conditions and I had nothing else.

"Then a few months ago my daughter drew my attention to an article about Hughes Syndrome. I'm wary of new developments in my condition but asked my doctor about it and he had never heard of it.

"Now I am doing all that I can to make people aware.

"I'm not jumping up and down with joy yet because I am going to have my first referral at St Thomas's Hospital in London, which is the main treatment centre, in October.

"I have spoken to neurological hospitals, other GPs and even NICE to draw attention to the condition.

"It could save the government millions of pounds on care and drugs if many people diagnosed with MS have Hughes Syndrome instead."

Causes miscarriages

A spokeswoman from the Hughes Syndrome Foundation said the condition was discovered by Dr Graham Hughes when a group of people he was treating for Lupus, the immune-system disease which is his speciality, did not fit the classic mould.

After painstaking detective work he found they all had a strange antibody in their blood which caused it to thicken and clot.

This caused less oxygen to reach the brain, body organs and the placenta in pregnant women.

It accounted for migraine, one in five recurrent miscarriages, deep vein thrombosis in young people and many other conditions which could be treated by aspirin, heparin injections and in more serious cases with warfarin.

The MS Society said it was rare for such misdiagnosis to occur but it was worth noting that it was "not impossible to have both Hughes and MS; a blood test for Hughes does not rule out having MS at the same time".


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