More than a quarter of people with Parkinson’s initially misdiagnosed, research finds

‘People are being left in limbo and seeing their health deteriorate,’ says Parkinson’s UK spokesperson

More than one in four people living with Parkinson’s were initially misdiagnosed, new research has found.

In a study conducted by Parkinson’s UK, 2,000 people were questioned about being diagnosed with the neurological condition, the symptoms of which can include involuntary shaking, slow movements and stiff muscles.

Around 145,000 people are diagnosed with Parkinson’s disease on an annual basis.

According to the poll, 26 per cent of respondents said they were originally diagnosed with a different medical condition.

Of the participants who received a misdiagnosis, almost half were treated for the wrongly-diagnosed condition, with 36 per cent receiving medication, 6 per cent undergoing operations or procedures and 6 per cent going through both.

More than a third of those who received unnecessary treatment said their health worsened as a result.

Twenty one per cent of the respondents said they visited their GP at least three times before being referred to a Parkinson’s specialist.

The poll also concluded that women were more likely to be misdiagnosed than men.

Moreover, misdiagnoses had a greater likelihood of occurring among patients aged between 51 and 60.​

Katie Goates, professional engagement programme manager at Parkinson’s UK, explained that Parkinson’s is “an incredibly complex condition with more than 40 symptoms” that “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,” Ms Goates stated.

“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.”

Katy Dickinson was diagnosed with the disease in May 2018 when she was 27 years old after several years of doctors’ appointments.

“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,” she said.

“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’.”

Ms Dickinson explained that despite the fact her uncle had Parkinson’s, initially a diagnosis of the condition “wasn’t considered” for her due to her age.

“It was a relief to finally be believed after years of being made to feel it was all in my head,” she added.

While there is no cure for Parkinson’s disease, available treatments include medication, physiotherapy and occupational therapy.