Gosport mum-of-three seeks to raise awareness of rare debilitating condition transverse myelitis

Lee-on-the-Solent woman Lucy Goodey first started experiencing symptoms of transverse myelitis starting with severe back pain in October last year - however, these were dismissed due to her pregnancy at the time.

It wasn’t until a few weeks later that severe ‘pins and needles’ type pain that caused Lucy to ‘stagger around’ and later resulted in spasming, led the family to call 111.

‘It was scary,’ the 32-year-old said.

‘We didn’t know what was wrong with me and my first two pregnancies had already been premature so I was at risk with the same happening again.’

Lucy was examined at Queen Alexandra Hospital where she was fitted with a catheter after she lost all feeling from her chest downwards.

She was blue-lighted in an ambulance to Southampton General Hospital to be seen by the neurological team.

There she was given an MRI scan at 3am and later diagnosed with transverse myelitis (TM), a rare condition that causes inflammatory attacks in the central nervous system and affects around 300 people in the UK every year.

Lucy - who had been working as a neonatal nurse at St Richard’s Hospital in Chichester - was given high dose steroids, painkillers and anti-spasming drugs to stabilise her condition, which she continued to take for the remainder of her pregnancy although she was left mainly immobile.

In February this year her daughter Florence - now 17 weeks old - was induced and she was born healthy, despite some concerns she could be addicted to the medication Lucy was on.

Now Lucy is mainly stuck inside her home in Cherque Farm and has to take 19 tablets a day to ensure her pain and symptoms from TM are managed.

However, she still endures severe pain and fatigue. She also has not yet shaken the sensation of pins and needles and is unable to tell when she needs to go to the toilet.

She said: ‘I used to be fiercely independent but now I’m so reliant on everyone.

‘They say that a third of people with TM make a full recovery, a third make a partial recovery and a third never recover at all.

‘My work has been understanding but I am meant to go back there later this year after my maternity leave.

‘My husband Darren who is in the RAF was supposed to deploy to Bahrain in March but his work cancelled that. The RAF has been really supportive and so have my friends and family.

‘But there’s not much specific support for TM locally. There’s a group based in the Midlands that I am in contact with as well as the TM Society and the Brain and Spine Foundation.

‘More people need to know about this. I’m a nurse and I had never heard of it before.’

Today - June 9 - is Transverse Myelitis Awareness Day.

Lucy set up her own business - Calming Moments Aromatherapy - to keep her occupied during her illness.

A message from the Editor, Mark Waldron

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