MS Awareness Day – Robert’s Story

Robert - MS Awareness Day patientA safety engineer from Stratford-upon-Avon who has been treated for Multiple Sclerosis (MS) at University Hospital in Coventry, has shared his story as part of World MS Day, which took place on May 31, 2017.

Robert, 54, who lives with his wife Elaine and has two grown-up children, was first diagnosed with MS at University Hospital almost two years ago.

Multiple Sclerosis is a serious condition which can affect the brain and/or spinal cord, causing a wide range of symptoms, including problems with vision, movement, sensation or balance.

While MS can be treatable, it is a lifelong condition that can sometimes cause serious disability. In many cases, it’s possible to treat the symptoms, and new disease-modifying therapies available on the NHS at University Hospital can also prevent relapses in many patients.

Robert explains:
“I often have to travel for work, and in March 2015, I was getting out of bed for an early morning commute when my legs felt a bit numb. I felt safe to drive so I went ahead with my business trip, but after a few days my legs still didn’t feel quite right so I made an appointment with my GP.”

Robert’s GP referred him to his local hospital for checks on his spine, but as nothing was discovered he felt well enough to return to work. However, the next month, he experienced double vision and needed to go back to his GP and to have his eyes tested, as well as being referred to a specialist Neurologist at University Hospital in Coventry.

Robert says:
“Things quickly got dramatically worse for me after I’d been referred for an MRI scan and additional tests. By the end of May 2015, I had double vision, could no longer drive, was struggling to walk, and ended up needing a wheelchair.

“Luckily the scans had the answer, as I was diagnosed with MS. While it was a life-changing diagnosis, in a way the news was a relief, as it was a known condition and there were things the doctors could do.

“However, I’d never even needed to go into hospital before, and suddenly I needed to stay in a whole month.”

Robert was treated with steroids, and with the help of these drugs, and the hospital’s physiotherapists, he was able to get the feeling back into his legs, and get out of bed and start moving.

Because his MS had been diagnosed early before his body had sustained too much damage, Robert was also the first patient at University Hospital to receive a new disease-modifying therapy, Lemtrada.

The majority of patients who receive this therapy only need two courses of treatment – it can’t repair any existing damage, but it can prevent relapses.

Robert says:
“I was given a variety of options for my treatment. All drugs have side effects, and as I hate needles, I was also hesitant about the monthly blood tests I’d need to have for five years, but the doctors and nurses told me about all the evidence for the new treatment.

“I had to have an infusion for four hours a day for five days whilst I was in hospital. I was prescribed other medication too, but other than that I was free to go home.”

Robert was discharged from hospital in July 2015 with a walker, but was soon walking unassisted and was able to go back to work. He went back into University Hospital for the second course of infusions a year later.

He explains:
“I can’t believe where I was two years ago – bedridden and not knowing if I’d ever walk again. I was trying not to think too much about it at the time; I just thought ‘well, this is my life now’.

“It was fantastic to be able to walk back into hospital a year later for my follow-up infusions, and to see the clinical staff who’d cared for me, as well as the hostesses and cleaners. The second time I was prepared for the long infusions though, by bringing an iPad so I could get some work done and keep myself more occupied!

“I’m so grateful that this treatment is available in Coventry and Warwickshire on the NHS, and for the fantastic NHS staff who’ve cared for me.”

Robert is also keen to share his experience with other people diagnosed with MS, as he explains:
“I’ve found so much out about the condition over the last two years, and I’ve also joined Facebook groups for the condition so that I can chat to other people diagnosed with MS about our experiences.

“I joined a gym to improve my fitness level, and as it turned out, a member of staff there also has the condition, so he’s been a massive support to me too.”

The MS team at UHCW is lead by Consultant Neurologists with the support of a Specialist Registrar, MS Specialist Nurses and medical secretaries.

As part of World MS Day, members of the team also went to Broadgate in Coventry, where Coventry City Council had arranged for the lights to turn orange to mark the occasion.

Sylvia Lyons, Multiple Sclerosis Specialist Nurse at University Hospitals Coventry and Warwickshire (UHCW) NHS Trust, said:
“We’re so pleased to see how well Robert is doing after his Lemtrada treatment at University Hospital.

“While there’s currently no cure for MS, having the condition is not what it was 25 years ago. It’s possible to treat the symptoms, and disease-modifying therapies like Lemtrada can also help prevent relapses and reduce disease progression.

“At UHCW, we care for over 2,000 patients with MS from across Coventry and Warwickshire and beyond, and we’re proud to be one of the recognised centres for MS in the UK.

“World MS Day is a fantastic opportunity to raise awareness of this condition, and encourage further research, and to share tips to help people to live well after their diagnosis.”