FOR more than two decades, John Simper was resigned to a slow and painful death from multiple sclerosis.

Unable to work or drive, plagued by recurrent headaches, bouts of confusion, short-term memory loss and weakness in his limbs, he feared that he would end up paralysed and in a wheelchair.

Today he feels mentally and physically stronger than he has in years, after being told that MS was almost certainly misdiagnosed. Instead he has an illness that can be treated with an aspirin a day.

He is one of hundreds who may have had MS, the progressive disease of the nervous system, misdiagnosed. At least 5 per cent of those told that they have MS are believed instead to have Hughes syndrome, which results in the blood becoming thick and sticky and liable to clot dangerously.

Patients in whom MS was diagnosed — the disease affects about 85,000 people in Britain — have experienced seemingly miraculous recoveries on learning the true cause of their illness, in some cases after decades of ignorance. Paralysed patients have regained the ability to walk and others have overcome debilitation, headaches, confusion and short-term memory loss with treatments involving blood-thinning drugs such as aspirin and warfarin.

Mr Simper, 60, from Ipswich, a former motorcycle racer and mechanic, went to his GP after reading about Hughes syndrome in a magazine. Recognising his symptoms in the article, he asked his GP for extra tests. They showed that he had Hughes. He is campaigning to increase awareness of the condition.

“I’ve got used to the idea of MS over the last 26 years. 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,” he said. “But people are needlessly suffering because they don’t know the truth about their illnesses, and the Government has to take notice of that.” An estimated 150,000 people in Britain suffer from the syndrome, first reported by Graham Hughes in the British Medical Journal in 1983. It has since been confirmed as the cause of one in five recurrent miscarriages, one in five strokes in younger people and one in five deep vein thromboses.

Yet Dr Hughes, now a professor at the London Lupus Centre, says that few GPs are alert to the condition and lives are still being ruined because simple tests are not offered as a matter of routine. “It is still totally under-recognised. People have been told they have MS and treated as such yet received no benefit, and the true cause has been under our nose the whole time,” he said.

Hazel Edwards, 48, a mother of two from Wrexham, North Wales, was paralysed from the neck down and received no benefit from chemotherapy and intravenous steroids after MS was diagnosed in 2001. She can now walk again, after a diagnosis from Dr Hughes.

“As soon as I started war-farin, my memory improved and I found I could walk,” she said. “Professor Hughes and his team gave me back my life.” She first suffered repeated miscarriages, memory loss, confusion and a loss of coordination 28 years ago.

The Department of Health was “not aware of any evidence that population screening would be beneficial”. Yet a survey at the lupus centre indicated as many as 32 per cent of patients suffering from Hughes syndrome had been diagnosed wrongly or treated for MS.

“The indications of MS and Hughes syndrome are extremely similar, even down to the MRI scans,” Professor Hughes said. “They can be extremely difficult to diagnose, but a simple blood test can make all the difference.”

He recommends that two blood tests be offered routinely to any MS patient who has suffered recurrent headaches, problems with clots, a family history of autoimmune diseases, or who has had recurrent miscarriages

Tell-tale signs of Hughes Syndrome

• People with Hughes Syndrome have abnormally thick or sticky blood, which is prone to clotting
  
• The blood often lacks oxygen, which prevents the brain from functioning properly. This is why many of the symptoms are similar to those of a neurological condition such as MS
  
• It is not known why people develop it, but illness or surgery are possible triggers
  
• It affects about one in five hundred 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 such as aspirin, heparin or warfarin. One junior aspirin a day may make a difference
  
• Contact the Hughes Syndrome Foundation on 0207-188 8217 or see www.hughes-syndrome.org

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