Rotherham Resident Describes Life with Uncontrollable Tics as Feeling Like a “Puppet on a String”
A Rotherham mother has shared her challenging journey after being diagnosed with a rare neurological disorder that has left her feeling like a “puppet on a string.” Jo Mason, 42, initially experienced migraines and vertigo, but her condition soon evolved into severe, uncontrollable body jerks reminiscent of Tourette’s syndrome.
Mason’s symptoms began in January 2021, starting with debilitating migraines and vertigo, which led her to seek medical attention. Following a series of tests, she was diagnosed with multiple sclerosis (MS) in September 2021 after markers were found in her spinal fluid. However, her condition took a drastic turn when she began to experience uncontrollable body tics that affected every limb.
“I tried to go back to work a few days later,” Mason 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.”
Mason’s situation worsened dramatically, and she began experiencing violent jerks of her limbs, causing her significant distress. Her husband, Ben, 47, noticed the severity of her symptoms and encouraged her to seek further medical help. “All my limbs were jerking suddenly,” Mason recounted. “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.”
Initially, doctors believed these symptoms were related to her MS and diagnosed her with dystonia, a condition characterized by involuntary muscle spasms. Despite extensive therapy and treatment, Mason’s symptoms persisted, prompting her to seek additional specialist advice.
Earlier this year, a specialist in London re-evaluated Mason’s condition and diagnosed her with Functional Neurological Disorder (FND). This condition impairs the brain’s ability to send and receive signals, causing physical symptoms without apparent neurological damage. Mason has been undergoing cognitive behavioural therapy (CBT) to address both the psychological and physical aspects of her disorder.
“I’m coming to the end of 15 sessions in the next couple of weeks,” Mason said. “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.”
In addition to the tics, Mason experiences facial spasms, body tremors, and derealization. “It’s a really long list of symptoms,” she added. “I can be completely bed-bound one day and functional the next.”
Mason has had to leave her job as a music teacher due to the severity of her symptoms, and she relies on mobility aids for daily activities. Despite the challenges, she remains hopeful for better understanding and management of her condition, urging for greater awareness of FND.
“FND is the ultimate invisible disability because you can’t see what’s gone wrong in the brain,” Mason explained. “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 gave us fantastic representation on ‘Britain’s Got Talent’ because he was raising awareness of it. But there are still a lot of people out there, unaware of what it is.”
Mason’s journey highlights the need for increased recognition and support for those living with functional neurological disorders, emphasizing the invisible nature of such conditions and the personal struggles faced by those affected.