There's Hope For Those With MS
More than 130,000 people are living with multiple sclerosis
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For 15 years I was told, and believed, I had fibromyalgia. I tried every drug the doctors threw at me but, of course, nothing worked. No one ever thought of diagnosing me with MS.
On reflection it was always clear that I was living with the condition as I experienced many of the tell-tale symptoms over the years. From going blind in both eyes with optic neuritis shortly after my youngest daughter Binky was born, to suddenly losing the strength in my arms leaving me unable to lift a saddle onto my horse. Not to mention the waves of chronic fatigue.
But I was bringing up three children, running a house, and travelling overseas with my former husband for his work, so each ‘episode’ I had I’d always put it down to my busy lifestyle.
‘Being told I had MS was terrifying’
Falling over became more frequent, and it was on one Sunday afternoon when I collapsed on someone’s front door step – my legs simply stopped working on the way to my favourite restaurant in Fulham with my daughters – when I knew I had to get answers. The next day I was fortunate enough to book a private appointment with a neurologist at Queen Mary’s Hospital. There I was sent for a range of tests; blood, spinal tap and an MRI, and at the end of that week a neurologist sat me down to go through my results. Mid-way through looking at my brain scan her computer died, so we had to run next door for her to access another one. Once it had finally loaded she said: “There’s a white smattering on your brain – we’d expect some at your age but…” I interrupted: “Do you think it’s MS?” She nodded. So, at 62-years-old I was then facing a future living with secondary progressive MS. It was terrifying.
‘I’ve never needed a treatment so much’
Recently my MS has got really bad, and I now experience proper exhaustion – something which, despite having regular chronic fatigue, I never really understood before. My leg twitches all down my right side, and I get really itchy skin all over my body. But last week, two and a half years since I was diagnosed, I was told I was eligible for Ocrelizumab.
Ocrelizumab will be the first treatment I’ve ever been suitable for, and I’ve never needed it so much. I was so excited when I signed the consent forms that I took a picture of them! With any luck I’ll have my first infusion this week.
‘Helping researchers understand MS’
While the new stats show the NHS is getting better at diagnosing people, I’m more than aware that thousands living with the condition are not being given the vital support they need. Sadly there isn’t a silver bullet that will fix our social care system, but what we can do to help people understand MS, if we’ve got MS ourselves, is to sign up to the MS Register. Since its launch it’s collected essential data from over 12,000 people with MS. By collecting information directly from people with MS it can provide a picture of the support that is needed day to day and over time that can be used to support research and influence change.
‘Hope for the 130 people diagnosed every week’
It might sound odd, but I thank my lucky stars I found out I had progressive MS when I did, as I’m sure there would’ve been things I wouldn’t have done over the years if I’d known about it. You see, back when I was first experiencing symptoms, MS simply wasn’t talked about and treatment options were pretty much non-existent. I only knew what it was because my aunt had lived with it years ago, and I knew the wonderful cellist Jacqueline du Pré had it. Other than those two people, I never heard it mentioned, and never met any other people living with it.
Now, I understand there are over a dozen treatments for relapsing MS, and getting diagnosed quicker can mean people are able to manage their symptoms and live well with the condition. And campaigns like the MS Society’s Stop MS Appeal – which aims to raise £100 million to find treatments for everyone with MS – offers hope to the estimated 130 people diagnosed every week.
