Page last updated at 09:37 GMT, Wednesday, 17 September 2008 10:37 UK

Unproven treatment 'aids my MS'

By Tracey
Multiple sclerosis patient

Dr Oliver Lily and Tracey
Tracey with her neurologist Dr Lily
Two years ago, my alarm went at 7.30am, I threw back the covers, my upper body moved but the rest did not.

I could not feel anything from the chest down, so I called work and said: "I'll probably be late in this morning". Shock I guess.

Later that day, a spinal specialist was completely honest and said it was either a tumour or multiple sclerosis.

Next came the MRI scan complete with a power cut, just when the "back-up" generator was elsewhere.

Lying there, stuck in the machine, in darkness, I was hoping it would be MS rather than a tumour, as the odds seemed better.

Two weeks later, I was diagnosed with MS aged 35. Initially I continued to work, but due to my daily symptoms I had to retire after an 18-year career.

Searching for help

I decided to find out how I could control my MS progression, as there is currently no cure.

I spent hours on the internet, bought all the books, looked for specialists, alternative thoughts and different ways of managing my condition.

One book stood out.

Professor George Jelinek
Professor Jelinek's methods are unorthodox

It was slim (no waffle) and written by a man with MS, who is also a Professor of Emergency Medicine in Perth, Australia.

Diagnosed nine years ago, aged 45, he, to this day, has managed to keep his condition remarkably under control and remains free of any further deterioration.

Disheartened by the lack of alternative information and support here in the UK, I flew 11,000 miles to meet the author - Professor George Jelinek.

Retreat to nature

Professor Jelinek runs five-day retreats for people with MS at the renowned Gawler Foundation in Australia.

This institute takes a holistic principle towards health and well-being and here I learned of Professor Jelinek's insights and research which help to control MS.

He also runs retreats in New Zealand with the MS Society of Auckland.

George - as he is happy to be called - looks amazingly healthy.

ALL OR NOTHING RULES
A ban on saturated fat (apart from that found incidentally in vegetable products)
High levels of vitamin D
Practice meditation
Exercise regularly
Take conventional medicine - if required

He follows a set of "All or Nothing" prevention rules, covering diet and exercise.

This is no "snake oil" cure. As another supporter says: "There is no money to be made from these dietary and lifestyle changes apart from the local green grocer and fishmonger."

Like George, I am not anti-drugs.

He occasionally takes glatiramer (his lucky rabbit's foot as he calls it), but I have, to date, declined to take any 'Disease Modifying Drugs'.

I feel we all need to be better informed about the benefits of all approaches, including drugs, to help best control MS.

Clinic support

Back home in Leeds, my neurologist Dr Oliver Lily helps run a treatment clinic for MS.

There is a growing body of anecdotal evidence showing that dietary and lifestyle changes can have a substantial effect on MS symptoms
Helen Yates
Multiple Sclerosis Resource Centre

He supports my personal choice and alternative approaches.

Most importantly, Dr Lily actually listens to his patients.

His interest was raised when my last MRI scan showed a reduction in the size of two lesions in my brain, since I had been following a diet of no legumes (as I am anaphylactic to peanuts) and Professor Jelinek's recommendations.

Repairing and reduction in lesions caused by MS is something Dr Lily has seen before.

Dr Lily said: "Neurologists are sceptical about unproven treatments for MS given the scores of widely-promoted alterative treatments which only provide a transient placebo effect at best.

"However it is important that we empower people with MS to make their own informed treatment decisions and that we support them in their choices."

Helen Yates, chief executive of the charity Multiple Sclerosis Resource Centre, said: "For many people this sort of holistic approach can prove very helpful in symptom management.

"There is a growing body of anecdotal evidence showing that dietary and lifestyle changes can have a substantial effect on MS symptoms."

I would like to see an increase in "helping yourself" with MS. Not all the 90,000 plus people in the UK with MS can fly to Australia to receive help from Professor Jelinek.

With no cure available, alternative voices should be heard. Let us all help to take control of MS.

My hopes are my new lifestyle will lead to a healthy future.


SEE ALSO
Multiple sclerosis
05 Jun 06 |  Medical notes

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