Muir mum speaks of five-year diagnosis wait anguish over mystery illness
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A ROSS mum-of-two struck down by mystery illness has described the distress of waiting five years for a diagnosis.
During her panic-stricken journey towards diagnosis, Claire McKay has been to A&E doubled-up in pain, has feared she was having a stroke, and has gone back and fore to the doctors "every week" petrified she had a deadly disease.
The 36-year-old, who says her condition causes excruciating nerve pain and muscular paralysis so severe there are days she has to use a wheelchair, was tested for a multitude of conditions - from cancer to MS - but the results were clear every time.
She was referred to a dietician - and even had a camera put into her stomach in a surgical procedure called a laparoscopy - but no nasties were found.
"It was horrendous," she said.
"Every clear test result that came back was like a punch in the face because all these things were happening to me and no-one could tell me what it was. I actually started worrying that the doctors were thinking this was some kind of a psychological thing, that it was all in my head."
The 36-year-old went on: "It was only when I went back to my neurologist for the second time that I could see in her face that she knew what was wrong. She did neurological examinations and it showed that I have positive signs of having a conversion disorder. I had to retrain the pathways in my brain because the signals were all muddled up.
"I got the official diagnosis in May 2018 and my symptoms started in 2013. It's been a lonely journey."
Her condition, functional neurological disorder (FND), has been described as one of the greatest medical mysteries of all time.
All of a sudden a patient is struck down by paralysis, or sight loss. When doctors do all the usual tests they can find nothing physically wrong.
She said the condition, for which there is no known cure, forced her to give up her job as an admin clerk with Police Scotland - with whom she had hoped to train to become a police officer.
She said it left her unable to enjoy activities like running and sports with her teenage daughter, Zoe (16) and her 13-year-old son Ethan.
And still she faces scepticism.
"Someone muttered behind my back one day 'well you were running about yesterday, you were fine then - why the sudden change?' I feel like I have to prove to people that it's happening, that I am really genuinely ill. A lot of people just don't understand that I can have a lapse. And when I'm parking the car and using my disabled badge you can see people looking at me and thinking 'why are you parking there'. They can't see any obvious signs of disability but they don't know that I've had to open the door wide enough to pull myself out of the car. Scepticism exists. I try to ignore it but its there."
She said painkillers, meditation and muscle spasm medication are controlling some of the symptoms and things are looking up.
"I'm coping with it a lot better now," she went on.
"I have a new part time job at the Women's Aid in Dingwall looking after the building. And I want to raise awareness of this terrible condition."
Claire, who lives at Broomhill Road in Muir of Ord, with husband Colin McKay (43) and her two children, will attempt to climb Ben Lomond on July 26 to raise funds and awareness of the FND Hope UK charity, which supports victims.
Bridget Mildo, founder of FND Hope, said: "Despite being as common as Multiple Sclerosis, most medical professionals have never heard of FND or are not aware of the recent advances in FND research. This is alarming considering FND patients can experience the same level of disability as those with Parkinson's Disease."
