A burning sensation across the scalp and a leg which felt wooden are just two of the symptoms a Preston woman describes before she was diagnosed with multiple sclerosis.
Commonly known as MS the neurological condition affects around 150,000 people in the UK.
To mark MS Awareness Week we’ve spoken with Suzanne Juniper who says she was in denial for years about having the condition.
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The 55-year-old, who lives in New Longton, is sharing her story and how life has changed in the past 26 years since she first noticed she had symptoms.
Suzanne said: “I was walking along a corridor at work and felt like my leg belonged to someone else. It was such a strange sensation, like my leg was completely wooden.
“And I had these very odd sensations on my scalp and I couldn’t even touch my hair. These sensations would come and go and change with time.”
Her symptoms became more severe through the years until 2009 when shortly after the birth of her second child she contracted sepsis and was hospitalised.
She said: “The hospital would not let me leave until I had a formal MS diagnosis because my symptoms had become a lot more severe.”
Suzanne continued to work following her diagnosis but in 2017 – when she says she had recently moved into a more senior role at the educational establishment where she was working – she experienced severe symptoms and lost feeling in the right side of her body and was unable to pick up her right leg.
This has led to her stopping work completely in the last few years and taking early retirement due to ill-health.
And there’s been lots of trips to and from Royal Preston Hospital for Suzanne and husband Dan.
Suzanne said: “I have seen the same neurologist the whole way through the process and I have a very supportive MS nurse too. They and the team have been brilliant with me.
“I find when attending appointments it is best to go with an agenda. So I will write down things I have been experiencing, want answers to, or want to discuss – and also I go with my husband.
“It’s important to have a second set of ears and someone who can explain things for you sometimes too.”
Suzanne is also receiving physio from a specialist neuro physio who they pay for separately.
She said: “I don’t think people realise as well as the physical and mental effects on you, there’s also the financial impact too.
“I’ve had to stop working earlier than I planned, and before that for many years I had reduced working hours too.
“We have equipment, some of it is funded, some of it we have to self-fund.”
Beginning to connect with her local MS society was a turning point for Suzanne.
She said: “I think I was in denial for many years. I didn’t want to admit that I had MS, even though I had been diagnosed. This is not uncommon though.
“You go from being someone who was very independent, had a career, and suddenly there’s this change in you.
“Going to the social group run by the MS Society really helped me. To have a place where you can drop-in for a bit, just have a cup of tea and take part in some activities, and speak with other people who are experiencing the same sensations and changes, it really helps.
“Whether you want the social connection or you’re wanting to get some help and advice, it’s so useful to have the opportunity to do so. I had been struggling at work and through the MS group I was referred to the Disability Law Service and it has proved to be invaluable. Without someone signposting me, things may have been very different.
“It’s such a positive group of people. I can’t recommend it enough.”
Living with MS or know someone who is?
The Preston MS Society Group is run by volunteers and creates a supportive and welcoming space for people who often feel isolated by the condition.
From running local social events, exercise and wellbeing sessions such as seated pilates, access to therapies such as reiki and podiatry, confidential talking therapy for those with MS and signposting and information services.
You can contact them on preston@mssociety.org.uk, call 03003239979 or follow their dedicated Facebook page.
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