MS drug trial helps golfer win again

By Richard Warry
Health editor, BBC News website

Tony Johnstone was told he would never play golf again

To win for the first time on the European Golf Seniors Tour would be special for anyone.

But Zimbabwean Tony Johnstone's victory in the Jersey Seniors Classic in June was quite out of the ordinary.

It was not the first time he had won a top-rank tournament - in fact he had a list of victories all over the world.

But it was his first win since being told he would never play golf again after being diagnosed with multiple sclerosis in 2004.

Tony is lucky even to be able to swing a golf club, let alone compete at the highest level.

He can thank his participation in trials of a new MS drug, alemtuzumab, for the remarkable turnaround in his fortunes.

But in 2003, when he first started to develop symptoms, his future looked decidedly bleak.

Feared the worst

"I woke up one Sunday morning and my left hand was numb, I thought I had been lying on it awkwardly," he said.

I thought I had had a stroke Tony Johnstone Drug may reverse MS damage

"As the day went on it progressed up my left arm. My whole left side went completely dead, and I thought I had had a stroke to be honest."

Tony went to see a neurologist, who suspected he had contracted a viral infection and prescribed steroids.

However, within a couple of months Tony's symptoms started to deteriorate.

"Everything went completely haywire. I lost all my energy, my co-ordination went out the window, my memory disintegrated totally," he said.

Tony tried to continue to play professional golf, but his symptoms were so problematic that he had to walk off the course several times.

He was particularly hard hit during a practice round prior to trying to qualify for the British Open in 2004: "It was like somebody had pulled the plug on me - I could hardly walk."

An MRI brain scan confirmed that he had MS.

My memory had come back, my co-ordination was improving, and within six months I realised I had been a very lucky boy Tony Johnstone

Fortunately, he was recommended for the alemtuzumab trial, and squeezed in just before it was closed to new patients. At that time the drug was known as campath.

He received two treatments, a year apart. The first, five-day session effectively shut down his immune system, allowing it to re-boot, without the fault that causes it to attack the nerves, and trigger MS.

The second, three-day session, 12 months later acted as a back-up to ensure the treatment was working.

"For the first couple of months you feel very tired - it has been likened to the feeling of chemotherapy, they shut down the immune system, and you feel fatigue," said Tony.

"But after the first treatment, probably within three months, I realised there was really a vast improvement.

"My memory had come back, my co-ordination was improving, and within six months I realised I had been a very lucky boy."

However, the road back to professional golf turned out to be long and hard.

"I thought it was going to be like riding a bicycle, get back on and carry on again," said Tony.

"But I would say it took two years for me to find a way to work around it, by thinking different thoughts, and feeling different feels in the golf swing - but I was pretty determined to get back to competing again."

"There is a way round it if you are determined - with the help of campath, without that I just would not have been able to do it."