I want to live life the best I can

Carl Nuttall was just 14 years old when he had his first MS attack. Now a healthy 16 year old, Carl remembers it all too well. "I had just been to a martial arts class when I had a seizure. I felt dizzy and started shaking. I tried to ring mum on her mobile but coudldn't." Unconcious, Carl was rushed to hospital and later woke up in Intensive Care.

At first, they thought it was a virus. But then a CAT scan revealed a big blotch on his brain. What could it be? An abscess? A tumour? Carl's slurred speech, his tiredness and inability to swallow suggested it could be. "Our world started to collapse", says Carl's father David. "We were all under extreme stress."

Carl had a six hour operation to get a biopsy of his brain. "The hours spent waiting for the results were the most difficult of our lives," says Lorraine. "We were numb with shock."

Carl didn't have a brain tumour. But what he did have was 'Acute Demyelinating Encephalomyelitis," the diagnosis after finding a large patch of demyelination on his brain. They gave him steroids and two weeks later sent him home. No one said anything about multiple sclerosis.

A month later, around Christmas 2000, Carl had another attack. This time, he had blurred vision, was shaky, felt sick, couldn't eat properly and was passing out. A few weeks later, in January 2001, Carl had another episode, this time with terrible tiredness, pins and needles, tingling and itching sensations, a strange 'band' feeling around his middle, walking, speech and bladder problems and his eyesight almost went completely.

"We've never had a case like this."

As a child of 14, Carl was being treated at the Sheffield Children's Hospital, in a ward with cases of cancer and leukemia. "We've never had a case like this," said his consultant neurologist Dr Chris Rittey. So they brought in a top neurologist from the Royal Hallamshire Hospital, who told Carl he had MS.

Carl says, "I felt very alone, There was no one else like me. I would like to meet other young people in the same situation." Carl's parents Lynne and David feel pretty alone too. Though they know they exist, they've never met anyone else having a child so young with MS.

Steroids got Carl back on his feet but school life would never be the same again. He missed virtually a whole school year, although teachers were sent to his home and he managed to take his GCSE's on time. "The school was very supportive," says Lynne. "They even gave Carl a mentor to help him find the easiest routes through the school without going up and down stairs too much."

His absence also made it hard for Carl to explain things to his school-mates. "I haven't told anyone I've got MS, just my closest friends. There's no reason to tell anybody. I don't want people knowing; they would probably avoid me or treat me differently. I don't want to be pitied or treated as a special case. I just want to be treated as a normal human being and get on with my life."

Once they had the diagnosis, Carl's parents wanted him to get treatment. Beta interferon was an obvious choice for someone like Carl but their local Health Authority said no. At this point, Lynne would have moved mountains and did. "At the time of Carl being very ill, we had to find the strength to write letters, make phone calls and to inform the local MP of our situation. In March 2001 we won the appeal for Carl to reveive betaferon."

"The betaferon has made quite a big difference," says Carl. "They said it would take between 6 and 12 months to do anything and they were right. For the first six months it didn't do anything, then it started working." He started at a low dose and gradually worked up. That's why Carl thinks he has been spared any side-effects.

Carl was taught how to inject himself by two MS nurses, Adrienne Cox and Diane Watts. But he prefers his mother Lynne to do it. She injects Carl every other day, in his legs, stomach, arms and backside.

As well as taking betaferon, Carl's parents wanted to make sure their son was doing absolutely everything he could to keep well and searched websites and bookshops for everything they could find on controllling MS.

No more gluten, dairy or saturated fat.

Before long, they had sheaves of stuff on diet and supplements and made some drastic changes to Carl's meals. Out went all gluten grains (wheat, barley, oats, rye) all dairy foods and anything with saturated fat. In came lot of fish, vegetables and low-fat foods.

Their GP was very lukewarm about this strategy. "I don't think he thought it was going to do him much good," says Lynne, "but he said it won't do him any harm. So we went ahead."

"I definately prefer this diet and have no problems with it," says Carl. Though it can cause difficulties when his friends want a McDonald's. Carl has to pretend he's not hungry or give some other excuse why he's not joining in the usual teenage pastime of eating hamburgers.

Carl also takes some supplements: Vitamin C, calcium EAP, a type of co-enzyme Q10, and fish oils. He went to see Anna Robinson, a biochemist and nutritionist in Barnsley, who suggested he had a hair analysis done. "We thought we've got to do whatever we can, says Lynne. "He was so ill."

The results were rather startling - the hair sample was high in mercury, high in antimony, low in calcium, low in copper and low in manganese. Lynne and David have no idea how Carl could have had these results.

As part of his programme to manage MS, Carl does a lot of exercise, including swimming, aquagym, and walking. "I walked through black fields, up hill and down dales, walking through grass to make my legs stronger."

Twice a week after school, Carl also trains in taekwondo, a Korean martial art. He's so good at it that he's now been awarded a black belt. "We are so proud of him," says Lynne.

I want to live my life as best I can

Now, Carl is free of all MS symptoms and his legs are strong enough to kick high in the air, thanks - they think - to the combination of betaferon, diet, supplements and exercise. "Carl was bad but we've brought him back very slowly," says Lynne. And they all agree that the experience has brought the family much closer together.

Getting MS at 14 is not something one would wish on anyone and there were times when Carl was very down. But he can see that the experience has changed him, for the better. "Before having the MS attacks I wasn't concentrating much on my school work. Now I am much more determined," says Carl, whose ambition is to become an accountant or financial advisor.

"I don't want MS to stop my life. I want to live my life as best I can. The MS has spurred me on to have a focus in life and to have goals."

This article was taken from the Pathways magazine - September/October 2002 edition.