MS sufferer seizes chance of 'revolutionary' treatment

It was one week before the successful businessman was due to get married.

"You would think that the timing was terrible, but actually the wedding did help to take my mind off the devastating diagnosis."

Robert started suffering from a stiff neck, especially after playing sport.

He went through all the conventional channels from GP to chiropractor, back specialists and consultants and after a year was eventually referred to a neurologist.

Even an MRI of his neck and back revealed nothing.

"Things got progressively worse. Everyone said it was stress, but I know what stress is and I know when something is physically wrong.

"In the end, I diagnosed myself before the medical profession did, using the internet."

It took a third neurologist and another MRI to finally confirm Robert's own diagnosis.

"I spent the first two years trying to find a cure for MS," says Robert frankly.

He was not happy with the conventional treatment offered to him on the NHS. He suffered adverse reactions and felt they were doing little to help him.

"I felt that I was being written off by the NHS."

Robert, who has two young daughters and a third due next month, then launched his own quest to overcome the MS.

He did hours and hours of research on the internet and completely changed his diet to include large doses of Vitamin D and looked into certain drugs which are not available in the UK but have helped MS sufferers abroad. He also has regular massages which he believes helps alleviate his symptoms

He doesn't like to calculate how much he has spent, and admits that there are people out there ready to take advantage of people desperate for a cure. One such man was Dr Robert Trossel, 56, who was yesterday struck off the General Medical Council register for giving patients "scientifically unjustifiable" treatment at his clinic in Rotterdam.

"You do have to be careful and do your research properly because you are willing to try anything," says Robert, who is about to undergo a new treatment for MS pioneered in Italy, known as CCSVI.

CCSVI is currently undergoing research, including some funded by the MS Society, after exciting results were revealed.

The theory is that multiple sclerosis can be caused by blockages in veins draining blood from the brain: Clear the blockages and MS symptoms may be reduced.

The idea was put forward by

an Italian scientist, Dr Paolo Zambon, who investigated links between MS and iron deposits in blood vessels.

He used ultrasound on the blood vessels leading in and out of the brain and found that in a majority of people with MS, including his wife, the veins taking blood away were blocked or damaged. This was not the case in people without MS.

He further suggested that iron was damaging the blood vessels and allowing the heavy metal, along with other unwelcome cells, to cross the crucial blood-brain barrier, a process he termed Chronic Cerebrospinal Venous Insufficiency (CCSVI).

Up until now anyone from the UK wanting to be tested or treated for the condition has

had to travel to clinics in Italy

or Poland.

Now the private Essential Health Clinic in Glasgow is offering treatment. Dr Tom Gilhooly sees patients from all over the UK and abroad for treatment and Robert has just been accepted as suitable for

the procedure, which will cost him 5,000.

Dr Gilhooly says the new approach is "potentially revolutionary".

The blockages in the veins are either dealt with by the insertion of a tiny tube, called a stent, or by balloon dilation. In both, the narrowed veins in the head are expanded in a procedure beginning in a leg vein.

Dr Gilhooly hopes his clinic can help with research into the condition and treatment by carrying out a randomised clinical trial.

"This is the most exciting thing that has happened in medicine in the 27 years since I qualified," he said. "There are a lot of eminent people who are very excited about this. The problem is the health service isn't very progressive or innovative. It is still very early days but you have to have someone who is prepared to be innovative or

else nothing would ever get off the ground.

"I am not sure why it is considered controversial; it is not the procedure which is controversial, it is just what it is being used for. If this proves as successful as we hope then it could be used for other neurological conditions. It is a remarkable discovery."

Dr Gilhooly's clinic is currently scanning people to see if they are suitable for the treatment which he is starting to offer at the end of October.

One of his first patients could be Robert Mason, whose recent scan showed he was a candidate for the procedure.

"The NHS is very blinkered when it comes to treatment of MS," says Robert. "They should be looking at these new treatments and funding trials in to them which ultimately could save the NHS money."

However, CCSVI is still in its infancy and some are sceptical about its effects.

The MS Society says that while supporting research into the treatment, it is too early to say how effective it is, but it has hit back at critics who claim the charity is dragging its feet.

It says there is not enough evidence to draw conclusions about CCSVI and how it relates to MS. Nothing is known about when people with MS get CCSVI, how many people with MS have CCSVI, whether CCSVI causes MS or whether MS causes CCSVI.

"It is also not clear whether CCSVI contributes in any way to the course of MS and more work is needed before any firm conclusions can be made."

Simon Gillespie, chief executive of the MS Society, says: "The society has been involved, from the very earliest stages, in coordinating research efforts into CCSVI in MS with MS charities worldwide. We will continue to work collaboratively with our extensive international network of partners on CCSVI and other promising areas

of research."

But for people like Robert, time is of the essence.

Dr Gilhooly adds: "There will come a time when this will have to be available on the NHS as it can't be ignored, but we are well short of that at the moment."

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