The 'ultimate invisible disability' which left Rotherham mum feeling 'like a puppet on a string'

A teacher had to quit her job after a rare neurological disorder left her feeling like a “puppet on a string”.

Jo Mason, 42, first started suspected something was wrong after beginning to experience migraines and vertigo. This soon developed into uncontrollable body jerks, were every limb would twitch and she’d throw her arms back and above her head.

After a string of tests, Jo was finally diagnosed with functional neurological disorder (FND). This is a rare neurological disorder where the brain has problems sending and receiving information to the rest of the body despite not being damaged, and can cause physical Tourette’s-like tics.

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The mum-of-two suffers with daily tics, sometimes struggles to walk, and even had to quit her job after developing the condition.

“It built up to the point where it was uncontrollable - I felt like a puppet on a string," she said. “All day, every day, just constant jerks and movements.”

But doctors initially diagnosed her with multiple sclerosis (MS) after doctors found markers in her spinal fluid consistent with the condition.

“I tried to go back to work a few days later,” said Jo, who first saw her GP about her symptoms in 2021. "On the first day, I had to be sent home by lunch.

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“My speech had gone, and I could barely stand.

“I thought this must’ve been part of my MS.”

Just one weekend later, Jo found she felt more “poorly” than ever.

Her husband, Ben, 47, noticed the tics, and advised her to go back to her GP. Her GP referred her back to her neurologist, who said the symptoms were part of her MS and that she was experiencing dystonia, causing involuntary muscle spasms and contractions.

Jo was told her brain was just “short-circuiting” - misfiring signals to each of her joints. She set out to help her own MS as much as possible, taking every therapy on offer to her.

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“I did everything I possibly could,” said Jo, from Rotherham, South Yorkshire. “I started disease modifying therapy, occupational therapy, talking therapy and electric therapy.

“I was exercising - I became the volunteer group co-ordinator for MS Society - Rotherham and Sheffield.

“The sessions were light and accessible - I was also working out in our home-gym.

“But, none of this was helping.

“I was still having all these symptoms.”

For more than two years Jo kept a diary of the 15 symptoms she was experiencing - most of them daily.

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As well as her dystonia, some of Jo’s other symptoms include facial tics, body tremors and derealisation.

“It’s a really long list of symptoms,” she said. “I can be completely bed bound one day and functional the next.

“The most frustrating thing is how different things can be, minute-to-minute.”

Earlier this year she was finally diagnosed with FND after visiting a specialist in London in February. He referred her for cognitive behavioural therapy sessions (CBT) to help Jo cope with her anxiety and trauma, which may have caused the condition.

She said: “I’m coming to the end of 15 sessions, in the next couple of weeks.

“As you look back - FND isn’t always trauma-related, but mine definitely is.

“I just haven’t dealt with things. The psychological pain has turned physical, and come out in all these different symptoms.”

She says she's now waiting to see a psychotherapist and is trying to raise awareness of the condition.

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“I’m still on a waiting list to see a psychotherapist - so a lot of my knowledge has come from my own research. Alex Mitchell, on ‘Britain’s Got Talent,’ gave us fantastic representation because he was raising awareness of it. But there are still a lot of people out there, unaware of what it is.

“FND is the ultimate invisible disability, because you can’t see what’s gone wrong in the brain."