'I thought I probably had a brain tumour' - Harborough mum describes terrifying moment as MS symptoms worsen

Visit mstrust.org.uk for more information and support with MS.Visit mstrust.org.uk for more information and support with MS.
Visit mstrust.org.uk for more information and support with MS.
A Market Harborough mum woke up one morning to find she had lost all co-ordination and was seeing double.

Antoinette Bell has re-lived the moment she realised her symptoms were very serious – even fearing a brain tumour.

The then 39-year-old’s symptoms were initially a mystery until they gradually worsened and she sought a diagnosis.

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“I thought I probably had a brain tumour, or I’d had a stroke. I was really terrified,” she said.

Antoinette’s multiple sclerosis (MS) diagnosis came out of nowhere particularly as someone who used to cycle regularly.

As her co-ordination became more difficult, her daughter said she was walking like “Jack Sparrow”. On another occasion, things were so bad that when she was halfway down the supermarket shopping aisle she was unable to put one foot in front of the other.

Looking back, Antoinette realised she had suffered the symptoms of MS for quite some time, including fatigue and “funny feelings in her legs” but brushed them off as work related until one of her legs would not “pick up properly”.

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Now she relies on a wheelchair or mobility scooter to get around. But, she says, due to uneven pavements and a lack of ramps and dropped curbs, she is forced to stay at home most days.

She said: “Around my town there are so many listed buildings with small steps – a very little thing that is totally restrictive. I used to love going into charity shops and Waterstones but the racks are so tightly packed to navigate with the scooter, so I no longer shop for pleasure and am limited to supermarkets most of the time.

“Without access to bookshops, I’m no longer able to read – which is incredibly isolating. I have had clinical depression since I was a teenager which has been exacerbated by isolation. I would love to go out more. It does get me down being at home every day. You can go mad being at home all the time. There’s only so much knitting you can do.”

A new report by the MS Trust revealed Antoinette’s experiences of being isolated and depressed are shared by thousands of others. It said the impact on the mental and physical health of those forced into being housebound by their condition is a major concern.

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It found 90 per cent of respondents said uneven pavements, limited dropped kerbs, or cars parked on the pavement made it difficult to leave their homes.

The mum called disability benefit - Personal Independence Payment (PIP)- a “godsend”, but the process of applying for the benefit is exhausting – and it is still difficult to get out when public transport is not accessible.

She added: “Our regional buses need a better accessibility plan as it is impossible to manoeuvre a wheelchair in the extremely narrow aisle and back into the wheelchair space. This means I’m not able to get to Leicester easily where the shops are more accessible.”

Occasionally, Antoinette plans a trip to London, where she finds public transport is more accessible, including the door opening in the middle of the bus which makes more wheelchair-friendly. She said: “If London can make public transport and shops more accessible, then why can’t regional towns?”

Visit mstrust.org.uk for more information and support with MS.

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