Joanna Livermore talks us through her long road to diagnosis, embracing lifestyle changes and the positives she’s taken from having MS
My first symptoms started back in 2010. I’d not long moved up to Greater Manchester from Essex. My feet started tingling. I remember walking from my car to work one morning and I was wearing ballet pumps. I couldn’t keep them on my feet – all sensation was gone from them and they just felt really cold. That sensation gradually travelled further up my legs, and I kept switching between feeling hypersensitive to feeling nothing from the waist down. I went to see my GP, who referred me for an MRI scan. I never heard anything back from the scan. I didn’t chase it so I assumed it wasn’t anything serious or worth worrying about. Whilst that sensation I was experiencing is nowhere near as bad as when it started out, it’s never really left me.
Between 2010 and 2017 I continued to pick up on odd bodily quirks. For example, I experienced random leg buckling, losing my balance without explanation, and even what I now know to be the multiple sclerosis (MS) hug (where you feel as if there is a tight band around your chest).
I could explain away everything though, from working too hard in the gym, to a sensitivity to caffeine. I distinctly remember one relapse where I spent about two weeks with my head over the toilet as I was persistently and violently sick from vertigo and double vision. Even at that point, aside from my GP suggesting that I might have had a stroke, it never seemed to cross anybody’s mind that I had MS.
That all changed in June 2017 when I lost my vision in one eye. After seeing my optician I was referred to St Paul’s eye unit in Liverpool and after three months, a lot of tests and loads of people asking me if I had tingling in my legs, I was told that I’d had optic neuritis and that I might have MS.
After the initial shock of being told that I might have MS, honestly – I didn’t expect it at all – my world fell apart. I didn’t get my confirmed diagnosis of MS until four months later and that period of time between being told that I might have it and it being diagnosed was the toughest wait I’ve ever experienced.
What it did do, though, was give me the time and space to process that I was going to be diagnosed with a serious medical condition, whether that be MS, or something else. I had counselling through my work’s employee assistance programme to come to terms with what was ahead, which really helped me to prepare mentally. When the diagnosis finally came, it was a relief. Limbo had felt worse than the reality. You can’t do anything in limbo. Life is uncertain. You can’t move forward.
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