Solihull mum's misdiagnosis left her unable to walk or talk
Solihull mum's misdiagnosis left her unable to walk or talk

A woman who dismissed her migraines as simply part of being a busy working mother was left unable to walk or speak after being diagnosed with a common neurological condition.

Sarah Lewis, 46, started experiencing severe headaches, swallowing difficulties and heart palpitations but doctors suggested she was likely just experiencing anxiety or stress.

The mother-of-two also put her symptoms down to overworking in her demanding role as an assistant management accountant while studying for accountancy exams and managing family responsibilities.

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The migraines grew increasingly persistent, and the day following her son's eighth birthday she discovered she couldn't walk straight "like being drunk" alongside speech difficulties.

She was rushed to Birmingham's Heartlands Hospital with suspected stroke or brain tumour where she underwent a week of tests - only to be told once more she was fine and "probably overdoing it" at work.

Several months later she finally received a diagnosis of functional neurological disorder (FND), a condition where the brain's 'software' malfunctions, disrupting communication between the brain and body.

The condition has left Sarah dependent on a wheelchair as she cannot walk independently and she now depends on her mother as her carer at her Solihull home in the West Midlands.

Yet despite these challenges, she has succeeded in transforming her life and launching a new career operating a thriving cake business with her 17-year-old son, Henry.

Sarah, who is also mother to 11 year old Lily, explained: "It was a case of my body intervening and saying 'right I think you need to stop now' when I just thought I was tired and overworked.

"I put myself under so much pressure, feeling like I had got to do everything and I was just taking on too much."

The first issues I started with were problems swallowing, food wouldn't go down the right way and I'd end up coughing and spluttering.

"Then I just started feeling really tired, I was going to lectures and about to sit accountancy exams while working full-time.

"So I just put it all down to working too hard and trying to do too much. I'm one of those people who just pushes on and just keeps going but I wasn't listening to my body."

Then palpitations started and as I'd lost my dad quite young to heart disease I was given a cardiac monitor to see if anything was wrong there - but it came back fine and the hospital said its probably just a bit of anxiety or stress.

The migraines started happening on an almost daily basis - instead of coming home and having dinner I'd just want to go to bed and lie down in a dark room.

"It was a very busy and stressful time at work but it became impossible to ignore the symptoms any longer."

I was just thinking I'll do something after the next deadline and kept pushing myself at work but it came to the point where my vision and speech started to go too.

"It was the day after my son's 8th birthday where it looked as if I was drunk, I could barely walk properly. It was like I was walking in a Fun House.

"I went back to my GP, I was starting to suffer from tremors too and they did a CT scan, blood tests and lumbar punctures - they thought it might be a brain tumour or a stroke."

Yet they still told me everything was OK after getting the test results back and said I was just probably overdoing it.

Following a referral to a neurology department, Sarah received a diagnosis of FND in September 2023.

The disorder causes involuntary physical symptoms, including loss of motor control, speech difficulties, sensory issues and cognitive impairment.

She continued: "But they could still not tell me if I would ever get better or how long this might last - and that is still the case today."

It's like a computer where my hardware is all fine but the software isn't.

"It happens a lot with people with ADHD, where people work to burnout, I basically worked until I broke."

I was never assessed for ADHD but I think most women my age have it to an extent anyway.

"I was never going to be able to work full-time after that. The doctor said to my husband 'don't treat her as if she's disabled'.

"But all of a sudden I was in a wheelchair and I can't really do anything on my own."

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The prognosis is very much it might get better or it might get worse - they still don't know.

"It has been really awful, there's no sugar coating it, but I was determined to have some quality of life."

Despite her challenges, Sarah, who remains dependent on a wheelchair but also relies on crutches, went on to establish her business Cakey Blinders, which has since evolved into a family enterprise.

She continued: "Baking was something I had a passion for so I began making the cakes and it is now a full family affair with everybody helping out - it became a therapy for me."

My mum lives with us and she helps me get the cakes in and out the oven as I still struggle with tremors and memory problems.

"My husband helps with the logistics and deliveries, Henry helps with everything and Lily helps come up with ideas too."

In a way it has brought us closer together.

"Now I finally feel like I have a purpose and a passion and my family come first before a job or money, which wasn't always the case.

"I think I have a better relationship with them now than I did before, so I'm trying to take away the positives."

Sometimes, the most hardest lessons in life can be the most important ones.