A mum was diagnosed with a rare neurological disorder after she developed physical Tourette’s-like tics which made her feel like a “puppet on a string”.
Jo Mason, 42, initially had migraines and vertigo but soon developed uncontrollable body jerks.
Every limb in her body started jerking - and she’d throw her arms back, above her head.
After a strong of tests was diagnosed with functional neurological disorder (FND).
FND is when the brain has problems receiving and sending information to the rest of the body - despite it not being damaged.
The former music teacher had to quit her job due to daily tics.
She sometimes struggles with walking - and will need a stick or mobility scooter to get around.
On a day-to-day basis, she's never sure when her symptoms will flare up.
Now, she’s looking for treatment to manage the disorder, but says she worries specialists don’t understand it.
Jo, who is now unemployed, from Rotherham, South Yorks., said: “FND is the ultimate invisible disability, because you can’t see what’s gone wrong in the brain.
“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.”
In January 2021, Jo began suffering from migraines and vertigo - and often felt like her head was spinning.
Shortly after symptoms began, she saw her GP - who referred her for a lumbar puncture and MRI.
She was diagnosed in September 2021 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,” she said.
“But on the first day, I had to be sent home by lunch.
“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.
Every limb in her body started jerking - and she’d throw her arms back, above her head.
Her husband, Ben, 47, noticed the tics, and advised her to go back to her GP and find out what was going on.
Jo said: “All my limbs were jerking, suddenly.
“It built up to the point where it was uncontrollable - I felt like a puppet on a string.
“All day, every day, just constant jerks and movements.”
She was referred back to her neurologist, who presumed her symptoms were part of her MS.
He said she was experiencing dystonia, a condition which causes 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.
“I did everything I possibly could,” she added.
“I started disease modifying therapy, occupational therapy, talking therapy and electric therapy.
“I was exercising - I became the volunteer group co-ordinator
