A ‘healthy and active’ mother who went to bed thinking she had stomach ache has revealed her devastation after waking up paralysed from the waist down.
Emese Illes-Toth, 44, from Hemel Hempstead, had enjoyed a normal weekend visiting a farm and walking to the post office with her son Almos Otvos, 10, but woke up the next morning with agonising stomach pain.
Just five days later, the mother-of-one, who had always been active and enjoyed running with her son, was left bed bound and paralysed in both her legs.
An MRI scan revealed the 44-year-old had transverse myelitis – a ‘one-in-a-million’ condition which caused inflammation on her spine, and she is now having to learn to walk again.
Emese Illes-Toth, 44, from Hemel Hempstead, has revealed how she was left stunned when she woke up after suffering from a stomach ache to realise she was paralysed from the waist down
The mother-of-one said she was completely devastated by her condition, which is a rare neurological transverse myelitis (pictured with Almos Otvos, 10,)
She explained that she had rarely ever suffered from health issues before, revealing: ‘There was no accident, no warning beforehand. There was inflammation so it’s not something I’ve done to myself from an accident or something.
‘I hadn’t even been ill. I’m a fairly healthy person to be honest which is why it was a shock to the system.
‘With hindsight, I did have skin sensitivity around my navel, but you don’t really think about it.
‘You have some sensitivity on your skin and then it goes away.
The mother-of-one has been unable to live at home with her son since she was first admitted to hospital in October 2019
‘Then I just woke up with a really strong stomach ache. When I turned onto my stomach it went onto my back.’
She continued: ‘It was really bad around my mid-section and that’s where the pain was.
‘The skin sensitivity intensified as well. I had to sit up straight while driving as I couldn’t lean back because it was too painful when [the seat] touched my skin.
‘When my right knee started to act up, it wasn’t supporting my weight properly and I was limping.’
Before developing the condition, Emese lived an active and independent life and stayed at her family home with her son Almos (pictured left, with her son’s father Istvan and right, with Almos)
After developing the stomach ache, Emese was initially determined to continue as normal as best she could
Yet the brave mother-of-one was determined to continue with her life as best she could, revealing: ‘I still went to work, drove to work and drove my son to school, but I started to be sick as well.’
Throughout the week, Emese’s health started to deteriorate and she decided to seek medical help.
She revealed: ‘I called the GP and went to see him and he said this wasn’t gastric.
‘My right leg wasn’t behaving. I couldn’t control it completely from my knee. By that time the pain went into my abdomen and I had some numbness in my thigh.
Within days the mother-of-one was in severe pain and she began to feel numbness in her legs, with a doctor recommending she go to A&E immediately
‘He thought I had dislocated my spine and was very worried. He sent me to A&E immediately.
‘My son’s father took me to A&E and I walked in, and I haven’t been home since.’
Within five days of waking up with the initial stomach pain, Emese was paralysed and bed-bound in hospital.
At first she feared it could be cancer – but a lumbar puncture showed no malignant cells and despite other tests, Emese tested negative for any infection but an MRI showed her spine was inflamed.
Five days after initially suffering from the stomach pain, Emese was bedbound in hospital and paralysed from the waist down (pictured, with her son)
She was treated with steroids and since her inflammation cleared she has faced the gruelling task of relearning how to walk with the help of a physiotherapist.
Despite making progress and being able to walk with the aid of a zimmer frame, Emese’s right knee becomes locked and trapped due to hyperextension.
She explained: ‘The first couple of weeks I cried a lot. It was mainly because I was always very active and very independent. My legs giving up on me like that was devastating.’
Emese said she had been shocked to be diagnosed with the rare condition, and admitted she had never heard of it before.
What is transverse myelitis? How neurological disorder causes inflammation of the spinal cord and can lead to paralysis
The term myelitis refers to inflammation of the spinal cord, transverse refers to the pattern of changes in sensation.
Transverse myelitis is the broad name of the disease, and there are various sub-types.
Causes of the condition include infections, sometimes caused by bacteria in raw foods, immune system disorders, and other disorders that may damage or destroy myelin, the fatty white insulating substance that covers nerve cell fibers.
Causes of the condition include infections and immune system disorders that destroy myelin, the fatty white insulating substance that covers nerve cell fibers
Inflammation within the spinal cord interrupts communications between nerve fibers in the spinal cord and the rest of the body, affecting sensation and nerve signaling below the injury.
That can lead to paralysis.
Condition can affect people of any age, gender, or race. It does not appear to be genetic or run in families.
Some people recover from transverse myelitis with minor or no long-term problems, but most suffer permanent impairments that affect their ability to perform ordinary tasks of daily living.
There is no cure for the disease.
She said: ‘I hadn’t heard about it before either, and I actually graduated from high school as a nurse. I had never heard of this condition myself.
‘It’s a very, very rare condition. I am ‘one-in-million’ as it affects one to two people out of a million. It’s really rare. Strange things always happen to me, so there you go.’
The mother-of-one has not been able to live at home since October 2019 and claims that while she has accepted her condition, she still cries over not being able to live with her 10-year-old son.
She said: ‘I have less bad days than I used to have. Everything just shrank in relevance compared to this.
She was initially devastated by the condition and revealed she was constantly in tears during her first weeks in hospital away from her family
‘My bad days are mainly because I’m away from my family now, it’s not even the condition.
‘Sometimes I do cry because of the condition, but it’s mainly because I miss everyone and want to go home.’
The sales manager is now fundraising to buy a Bioness L300 GO stimulation system which will send electrical impulses to stimulate her leg and raise it from the ground.
The specialist equipment costs £10,000 and is not available on the NHS but would help her to walk and return home to her son.
Months after initially arriving in hospital, Emese is determined to learn how to walk again and return to live with her son
Emese said: ‘It would be a game-changer for me. It would change my life.
‘I know it sounds silly, but every time I think about it I get this very good, very positive warm feeling inside of me and I know that’s what’s going to help me with the final stage of my recovery.
‘They say a positive mindset and determination are 90% of getting better. I’m generally a positive person and I have accepted it.
Emese, who said she is a positive person and is focusing on having a positive mindset, is determined to walk again despite it being ‘extremely difficult’ to bend her leg
‘My leg just stays [in hyperextension] and it’s extremely difficult for me to bend it. That’s what [the equipment] helps.
‘It also helps with the weak hamstrings so you can actually lift your leg up better and more easily. It helps you to go up and down the stairs.’
She added: ‘I’m hoping it will only take me another six months to get rid of this final thing, and then I’m back to normal.’
You can donate to Emese’s GoFundMe page here.