'I'm a 26-year-old Plumstead woman living with multiple sclerosis'

Ellie-Louise, from Plumstead, had just the month before gone to the A&E department at Queen Elizabeth Hospital with what she describes as “random symptoms” – including headaches, confusion and tingles.

She was put in an isolation room with suspected meningitis while “no one really knew what was wrong”, and waited days for a lumbar puncture to confirm the diagnosis.

After this failed, and she was told she’d have to wait another few days for an anaesthetist, Ellie-Louise discharged herself – having been warned of the dangers of leaving hospital if she did have meningitis.

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Ellie-Louise says she felt “better from pain relief” and was “prepared to take the risk” – and it wasn’t until she became paralysed from the waist down that she knew something more serious was wrong.

Ellie-Louise told the News Shopper: “It’s really quite worrying when you wake up and can’t walk so I then went to loads of A&E departments again.

“None of them said it could be MS, and I wasn’t offered an MRI scan.

Ellie-Louise Jones

“I was told it could be a stroke, anxiety, and loads of different things – but no one thought my symptoms added up until my GP actually referred me for an MRI.

“In February, I got a call back saying I had multiple white lesions and that it looked like it could be MS.

“I went to see a neurologist in May and I was diagnosed with severe, rapidly evolving, relapsing, remitting multiple sclerosis.”

A spokesperson for the Lewisham and Greenwich NHS Trust has said it encourages anyone with concerns about their care to contact its complaints service to a “thorough investigation” can be carried out.

Ellie-Louise explained how she had been having symptoms for years – but that it kept being put down to anxiety, puberty and “everything else apart from MS”.

“It took six months properly for someone to say ‘this is what it is’,” she added.

“It also wasn’t just that I’ve got MS and it’s okay, but that I’ve got MS and need a high treatment – that’s really quite bad”.

Ellie-Louise began her treatment at Darent Valley Hospital on June 1 and now goes back once a month.

Ellie-Louise, who worked full time as a PA in London before her diagnosis, explained: “I want to raise awareness that it was missed, and that I had been having different signs and symptoms for a while and it was put down to other things.

“It makes me wonder what would have happened if I was diagnosed and on treatment sooner.

“It probably wouldn’t be affecting me as much as it is now.”

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Ellie-Louise said her life has been a “rollercoaster” since her diagnosis – with processing and acceptance of her condition.

She also had to give up her job, which she had just been promoted in, to work part-time in admin more locally in order to manage her symptoms.

She said: “It’s been a difficult time – at my age you don’t think you’ve got MS.

“When I was googling my symptoms MS came up but I thought ‘I’m pretty sure that’s an old person’s disease and I don’t think it’ll affect me’.

“What I found out is that the majority of people who get diagnosed with it are young women.

“I can’t get around as much – my legs tingle, they go numb and I have thinking and mobility issues.

“It’s changed my life completely.”

Ellie-Louise Jones

Ellie-Louise has set up a public Instagram account, @MSwithEllsx, to share her experience as she doesn’t want people to feel “alone” like she did.

She added: “I get loads of messages and questions about how it works with treatment, how to prepare for this, my diagnosis and my symptoms.

“Everyone with MS is different and they will all get different symptoms but it’s good for people to know they aren’t alone.

“Through this devastating time I have also done my bit for the MS society charity – and my fiancé will be doing the London-Essex ride on May 29 to raise funds.

“My friends and family have been amazing but sometimes I have to sacrifice not going out and pull out of things last minute.

“It doesn’t effect friendships and it’s hard that I have to miss out – but they are amazing about it.”

A spokesperson for the Lewisham and Greenwich NHS Trust said: “We’re unable to comment on individual cases due to patient confidentiality.

“However, we would encourage anyone with concerns about their care to contact our PALS and complaints service, which will carry out a thorough investigation.”

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