Mum's diagnosis leaves her jolting 'like a puppet on a string'

A woman smiling at the camera
-Credit: (Image: SWNS)

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 would throw her arms back above her head. After a series of tests, she was diagnosed with functional neurological disorder (FND). FND is when the brain has problems sending and receiving signals to the rest of the body - despite there being no physical damage.

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 do not understand it. Jo, who is now unemployed, from Rotherham, South Yorkshire, said: "FND is the ultimate invisible disability, because you can't see what's gone wrong in the brain.

A woman smiling at the camera
Jo initially had migraines and vertigo but soon developed uncontrollable body jerks -Credit:SWNS

"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 started experiencing migraines and vertigo, often feeling like her head was spinning. After seeing her GP, she was referred for a lumbar puncture and MRI. By September 2021, she was diagnosed with multiple sclerosis (MS) after doctors discovered markers in her spinal fluid indicative of the condition.

"I tried to return to work a few days later," she revealed. "But on the first day, I had to be sent home by lunchtime. My speech had disappeared, and I could barely stand. I assumed this was part of my MS."

Just one weekend later, Jo found herself feeling more unwell than ever before. Every limb in her body began jerking uncontrollably, causing her arms to fling back above her head. Her husband, Ben, 47, noticed these tics and advised her to revisit her GP to understand what was happening.

Jo explained: "All my limbs were jerking, suddenly. It escalated 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 believed her symptoms were part of her MS. He diagnosed her with dystonia, a condition that causes involuntary muscle spasms and contractions.

Jo was informed that her brain was simply 'short-circuiting' - sending incorrect signals to each of her joints. She decided to do everything she could to manage her own MS, taking advantage of every therapy available to her.

"I did everything I possibly could," she said, detailing her extensive efforts to combat her condition. "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."

Jo meticulously charted her health struggles, maintaining a diary of her symptoms for over two years, during which she tracked 15 different symptoms that she experienced almost daily. After visiting a specialist in London on 2/24, she underwent a rigorous evaluation that included background checks, symptom discussions, and further brain exams.

The diagnosis was FND a complex and often misunderstood neurological disorder. The specialist then recommended cognitive behavioural therapy (CBT) sessions aimed at guiding Jo through her anxiety and trauma, potentially responsible for her condition. Reflecting on her near completion of the therapy, 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."

Along with dystonia, Jo suffers from an array of disruptive symptoms like facial tics, body tremors, and a condition known as derealisation.

"It's a really long list of symptoms," she conveyed her frustration. "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."