Post-polio case misdiagnosed as ME

June 17, 2009

From the Henley Standard

This news story yet again illustrates the need for doctors to carry out a thorough clinical assessment – involving history, examination and blood tests – before a diagnosis of ME/CFS is confirmed.  The medical procedure for doing so is described in detail in section 6 (Diagnostic Assessment) of ‘ME/CFS/PVFS  An Exploration of the Key Clinical Issues' – the MEA guidance for health professionals.

Post polio syndrome (PPS) is an established post-viral condition that should always be considered where a patient is known to have previously been infected with a polio virus. Mild cases of infection with polio can sometimes go undiagnosed and could still result in cases of PPS in later life.

‘I want GPs to learn about crippling condition

LIKE many young girls, Sandy Yarrow wanted to become a professional dancer.

But her dreams were shattered when, aged just 11, she contracted polio.

For a while, she kept performing and continued playing netball and taking part in athletics but as her health worsened, she had to give it all up.

Almost three decades later, and by then married with two children, she developed post polio syndrome, a little known condition that GPs failed to diagnose for several years, causing her health to deteriorate.

Now 62 and severely disabled, Mrs Yarrow wants to raise awareness of the disease as part of a campaign by the British Polio Fellowship.

She lives in Priory Copse with husband Eric, to whom she has been married for more than 40 years.

Mr Yarrow has to do all the housework and gardening because of his wife's condition while she recalls what might have been.

"As a child I just loved to dance," she said. "My favourite was ballet and acrobatic dancing – everybody thought I was made of rubber.

"I was very flexible and could be doubled in half. When I was nine and 10 I was chosen to dance in two shows in the West End, and I was promised a solo part when I was 11. I would have been a professional dancer – I was absolutely heartbroken when I had to give it all up. My life would have been

very different."

The polio left her with weakness in her left arm. "I couldn't lift it up past my shoulder and I had no control over it," said Mrs Yarrow.

"I used to get quite breathless. By the end of my teens I knew I couldn't carry on.

Despite her condition, Mrs Yarrow was able to work for many years as a receptionist but, in her late thirties, she began having regular fainting fits and when she was 44, contracted a virus from which she has never recovered.

She recalled: "I was incredibly weak and had no energy. In the end I was pensioned off work."

In 1992, she was incorrectly diagnosed with myalgic encephalomyelitis. It was only when she came across an article in the ME Association's members magazine that she found out about PPS, a condition few GPs know about.

"It was a flash of realisation for me," said Mrs Yarrow. "I contacted the consultant who wrote the article and he felt that I definitely had PPS and provided me with information to take to my GP.

"At first they wouldn't believe that my shoulder was hurting and that I had a breathing problem."

She was referred to a series of specialists until finally in 2001, with her condition having seriousy deteriorated, she saw a respiratory specialist who confirmed PPS.

"My left arm is now permanently in a sling and my right arm is losing strength through overuse.

Mrs Yarrow said: "The muscles in my throat have stopped working so I'm tube-fed and I only have 40 per cent of my lung capacity. It is absolute torture. I'm in a lot of pain and can only walk short distances."

However, she added: "I have a wonderful husband, two lovely children and three grandchildren – I wouldn't swap them for the world."

Mr Yarrow, an electrical salesman, said: "Sandy is a caring woman, we have a strong relationship. I would do anything for her and I consider myself lucky to have her."

His wife is anxious to improve people's knowledge of PPS.

"The doctors have got to start learning about it," said Mrs Yarrow. "I don't think it's necessarily their fault because it hasn't been documented very much but we're trying to get the message to GPs.

"They need to listen to their patients when they come to them with problems and say they've had polio. They need specialist treatment and there are specialists around who can help them.

"If one of those consultants had diagnosed me properly all those years ago my condition could have been better managed and I probably wouldn't have deteriorated to this extent."

A WOMAN from Rotherfield Peppard is campaigning for more awareness of the crippling disease that nearly killed her and was not diagnosed for seven years. PHIL SIMMS reports.

POLIO was widespread in Britain in the Forties and Fifties but with the introduction of vaccinations was largely wiped out by the Seventies.

There are now an estimated 120,000 polio survivors, 80 per cent of whom are likely to develop PPS, a neurological condition that can arise 15 to 40 years later.

Symptoms include muscle wastage, muscle and joint pain, mental and physical fatigue and impaired circulation and breathing.

A recent survey by the British Polio Fellowship showed 55 per cent of GPs are unable to diagnose the debilitating effects of PPS.

For more information, visit the British Polio Fellowship.

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