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More than one in four people with parkinson's initially misdiagnosed - poll

Peter Byrne/PA Wire

By Jane Kirby, PA Health Editor

More than a quarter of people with Parkinson's disease were initially misdiagnosed, research has found.

The poll of more than 2,000 people found 26% were first told they had something else, while 21% saw their GP three or more times before being referred to a specialist.

Of those who were misdiagnosed, 48% were given treatment for their non-existent condition, with 36% receiving medication, 6% undergoing operations or procedures and a further 6% given both medication and operations or procedures.

Of the people receiving unnecessary treatment, more than a third (34%) said their health had got worse as a result.

The poll, for Parkinson's UK, also found that women were more likely to be misdiagnosed than men, and errors were most common in people aged 51 to 60.

Katie Goates, professional engagement programme manager at Parkinson's UK, said: "Parkinson's is an incredibly complex condition with more than 40 symptoms, and it affects everyone differently.

"One of the biggest challenges for Parkinson's research is that there is no definitive test for Parkinson's, and as a result we've heard of people being misdiagnosed with anything from a frozen shoulder or anxiety to a stroke.

"Our survey has shown that because of this, people are being left in limbo and seeing their health deteriorate, which is unacceptable.

"We are investing in vital research to find a much-needed diagnostic test, but we also recognise the key role that health professionals have in helping people with Parkinson's get the right diagnosis and treatment as soon as possible."

Around 145,000 people in the UK are diagnosed with Parkinson's every year.

Katy Dickinson was diagnosed with the disease in May 2018 at the age of 27 but had suffered symptoms for years.

She said: "I've always had a tremor but about four years ago it got worse. I also noticed that my left foot was dragging and my voice started to be affected.

"I went to the doctors but no-one could understand what was wrong with me.

"It took four years of appointments and being told that I was 'doing it to myself' before I got my diagnosis.

"In that time I was wrongly diagnosed with a functional neurological disorder and told that the way I was walking was 'learned behaviour'.

"My uncle had Parkinson's and my mum was saying all along that it could be Parkinson's for me too, but it wasn't considered because of my age.

"At the worst point I couldn't eat and went from eight stone to under six stone.

"Eventually, in early 2018, I went to A&E because I kept falling.

"The doctors wanted to send me home the next day but the nurses insisted I stayed in because I was really dehydrated.

"I was admitted to hospital and had every test going - ultrasounds, ECGs and drug tests and still the doctors were stumped until I finally saw a neurologist and he diagnosed Parkinson's.

"In total, I was in hospital for six months.

"It was a relief to finally be believed after years of being made to feel it was all in my head."

Signs of Parkinson's can include handwriting getting smaller; tremor, especially in fingers, hands or feet; uncontrollable movements during sleep; limb stiffness or slow movement and changes to voice or posture.