Watch more of our videos on Shots!
and live on Freeview channel 276
A mum who has a rare neurological disorder says her tics make her feel like a “puppet on a string”.
Jo Mason, aged 42, began suffering from migraines and vertigo in 2021, and was diagnosed with multiple sclerosis (MS).
The week after her diagnosis, in September, she started to experience full-body jerks, throwing her arms above her head.
Jo, who lives in Rotherham, 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.”
Her neurologist said the symptoms were part of her MS, and that she was experiencing dystonia which causes muscle spasms and contractions.
So, she set out to do everything she could to help the symptoms. She said: “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.”
Jo had to quit her job as a music teacher due to her tics and other symptoms, which include pain and difficulty walking.
In February 2024 – two years later – she visited a specialist in London, and was diagnosed with functional neurological disorder (FND).
The condition occurs when the brain has problems receiving and sending information to the rest of the body, despite it not being damaged.
Jo said: “FND is the ultimate invisible disability, because you can’t see what’s gone wrong in the brain. There are still a lot of people out there, unaware of what it is.” She was referred for cognitive behavioural therapy sessions (CBT) to help cope with her anxiety and trauma, which may have led to the diagnosis.
“FND isn’t always trauma-related, but mine definitely is,” Jo said.
“I just haven’t dealt with things. The psychological pain has turned physical, and come out in all these different symptoms.”
As well as dystonia, Jo suffers from facial tics, body tremors, difficulty speaking, body trembling, limb weakness, and derealisation.
“It’s a really long list of symptoms, and I can be completely bed bound one day, and functional the next,” she said.
“The most frustrating thing is how different things can be, minute-to-minute.”