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What she thought was RSI turned out to be a fatal disease

What she thought was RSI turned out to be a fatal disease

A terminally ill woman has shared the heartbreaking moment she was told she had a motor neurone disease at 29 - after assuming the symptoms were originally just a repetitive strain injury.

Jo Knowlton, 30, says she was told the devastating news in late 2019 after going to the doctors when she struggled to use her hands properly.

The once-was fitness lover had been test-driving a car when she found she wasn’t able to turn on the ignition.

A month later she found her problem had only worsened as she was now struggling to button shirts and use zips.

“By March, I noticed that I couldn’t close my fingers together and was starting to struggle with the handbrake on my car, as well as buttons and zips, so I decided to visit my GP, I felt like a bit of a hypochondriac to be honest,” she said.

“After showing her my hands she thought it might be repetitive strain injury or a trapped nerve.”

In August 2019, she began to receive tests and was admitted to hospital where possible causes were ruled out time and time again - unfortunately her optimism and hope that she was healthy was short lived.

“I had no idea it was terminal, without available treatment or a cure,” she admitted.

“I was waiting in the hospital for my result, the doctors were doing their morning rounds but no one would come near me.

“The neurologist eventually came and walked me to a side room. He sat me down and said ‘it’s not good news I’m afraid, you have motor neurone disease’.

“My initial reaction was ‘so what now, what treatment do I start, what do we need to do next?’

“I had no idea it was terminal, without available treatment or a cure.

“I was devastated. I felt fine and I didn’t understand how this could be the conclusion.

“I thought I had my whole life ahead of me but now I was faced with being told I had a terminal illness aged 29.”

Jo is the youngest person in her region to have been diagnosed with the disease.

Her daily habits and routine has changed completely.

Jo says she used to start her day at 5 am to go for a run with her dog, and then walk to the gym before work.

Now she struggles to walk down the steps of her flat.

“I really miss just walking for miles and miles with my dog. Some weeks I would have done 100,000 steps. I now struggle to walk to my car,” she said.

Jo added: “No one knows what causes it.

“It can be genetic but it can also be sporadic. That’s what mine is, incredibly bad luck.”

There is no treatment for MND, but Jo had been scheduled to take part in drug trials that have since been postponed due to coronavirus.