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Calling the MS detectives

Scotland’s community of 10,000 multiple sclerosis sufferers will be focused intently on a hotel in Clydebank this weekend, where the potential of a controversial new treatment will be debated by clinical experts.

Specialists from Poland, Canada, Bulgaria, Jordan and the UK will come together to discuss the theories of Dr Paulo Zamboni, an Italian vascular surgeon, who claims that the symptoms of MS can be treated by clearing the blocked veins which cause toxic build-ups in the brain.

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Already, dozens of Scots with MS have travelled to eastern Europe to be treated for Chronic Cerebro-Spinal Venous Insufficiency (CCSVI), which involves balloon angioplasties or stents being fitted into the jugular and azygos veins in the neck.

The procedure to tackle CCSVI is the most talked-about MS regimen in recent years, and is already a multi-million-pound industry with treatments costing around £7000. Now, a group of doctors from the fields of vascular, neurological and radiological medicine will meet in Glasgow to discuss Dr Zamboni’s theories.

But does CCSVI work? Six months ago, Barry McArthur, 29, from Paisley, stood on the steps of his Katowice hotel the morning after his procedure and announced to the world in an exhilarated voice he felt “a million times better”. His dizziness had gone, he could stand upright unaided for the first time in months and his speech was no longer slurred.

Stephen Law, 47, of Hamilton, was “almost suicidal” before he travelled to Poland, due to the extreme exhaustion he suffered all day and every day and his incredibly poor quality of life. In the weeks after the procedure, however, he felt so well he could clock up 14 kilometres at a time on his stationary exercise bike.

The same effects were heralded by others who had gone through the CCSVI operation in Poland. Train driver Kevin Quinn, from Glasgow, was “totally energised” after his angioplasties. He could walk greater distances and his eyesight and memory improved. Glasgow-born radio presenter “Tiger” Tim Stevens felt a warmth return to his feet for the first time in years. The spasms in his left leg abated. He felt “wonderful”. Meanwhile, a Californian schoolteacher, Deegie Phelps, 69, threw down her crutches and walked unaided, in a scene straight out of an evangelical church healing

Six months on, however, the reports are disheartening. Barry McArthur has returned to his wheelchair. Stephen Law has lost his new burst of energy and is tired again and, while his cramps are not so severe, they have returned. Kevin Quinn has also regressed. “I’m still working as a train driver but I’ve lost the energy I had. I believe the balloons I had inserted in my veins have collapsed and I’m back to square one.”

Tim Stevens has since returned to Poland for a second procedure. The balloon angioplasty he’d had carried out on the left side of his chest had collapsed and he had a stent inserted. Tim’s voice is again slurred, however, and he still can’t walk unaided. “I tried to climb up a single step the other day,” he said. “My brain thought it could but the leg told it otherwise.”

But why have so many of those treated later regressed? Dr Tomasz Ludyga, of the Euromedic Clinic in Katowice, who carried out the Scots’ procedures, offers an explanation.

“We can’t explain this entirely but we think when there is a blocked circulation some substances are secreted in the brain to protect it, which results in damage.”

He added: What we are looking at is a substance called Endoterin 1 and its levels before the procedure and after. After the procedure, the veinous obstructions are cleared and we think these substances disappear. And we can get some initial improvement in the body functions such as headaches going, feet warming, improved retina, balance improving.

“But if a patient, for example, had a disease for 20 years or more then you can’t expect them to be cured immediately. The damage to the neurons in the brain and the spinal cord means that the restoration could take several years. The feeling of the neurons has just started.”

Dr Ludyga added that CCSVI was not a cure. Nor could he offer categorical explanations for the initial successes and the subsequent regressions. Tim Stevens puts the procedure in perspective. “I think we have to appreciate we are all guinea pigs at the moment. No-one knows why CCSVI works to a degree for some and not at all for others. Doctors are still putting the pieces together.”

What pieces seem to fit? MS sufferers and doctors working on CCSVI share the growing belief that MS is not a single illness but a collection of symptoms. But the CCSVI procedures’ initial success at least indicates that venal malfunction is the cause of some MS symptoms.

Deegie Phelps’s later experience throws additional light on the condition. After her regression, she had another vein checked out for blockage, this time the iliac vein in her hip. She was discovered to have May-Thurner’s Syndrome, whereby a vein was being compressed by the right iliac artery. She had a stent put in place. “It’s been three months, now, and the veins that have been stented have stayed open. I have lots of energy still.”

If MS is not a single illness but an umbrella label for varying symptoms, Caroline Stevens, a dietician who has researched her husband’s condition extensively over the past five years, believes that the method of diagnosis is hugely important.

“The problem with CCSVI, as I see it, is that those with MS have to be scanned properly. But it’s complex. Some doctors use a Doppler imaging machine to determine if veins are blocked, but they don’t reveal blocked veins in all patients. Those thinking of undergoing CCSVI should make sure they are scanned properly.

“What people thinking about undergoing CCSVI should consider is that balloon angioplasties can collapse, which means being re-scanned and a return to Poland to repeat the process, perhaps having a stent fitted. But stents can be problematic. You have to take drugs to prevent the body reacting to them.” Stephen Law, however, says he doesn’t regret undergoing CCSVI. “I don’t have pain any more. I have the fatigue again, though, and I wish there was more follow-up from Poland but at least the research is moving in the right direction.”

Dr Doug Brown, head of biomedical research for the MS Society, said: “We believe that CCSVI is a very interesting avenue of research but there is currently not enough evidence to draw firm conclusions about whether treatment for CCSVI is safe or effective for people with MS.

“We are collaborating with other MS societies across the world to speed up research into studying the link between CCSVI and MS.

“As with any unproven treatment, we do not recommend that people seek this outside of properly regulated clinical trials.”

CCSVI – The Way Forward, Beardmore Hotel and Conference Centre, Clydebank, October 29 and 30.

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