A familiar tale
I think that my MS is story is probably one that is very similar to a lot of other MSers. Although I was officially diagnosed with MS in 2013, I have probably had the disease since 2002…
In my GCSE years I after a bought of glandular fever which seemed to last a lifetime, I suffered with what doctors thought was ‘chronic fatigue’, rendering me unable to attend school for many months. I now think that this was probably my first relapse.
This was just the beginning of my journey, with various symptoms presenting over the years which came and then went away again… mysteriously vanishing sometimes as quickly as they came on. As a teenager and young adult, I attended numerous different departments of the hospital, seeing different consultants, all who seemingly found nothing ‘physiologically’ wrong with me.
I am sure many of you mirror this experience – feeling like a fraud after failing to fit the mould for various different illnesses.
More strange symptoms
My official diagnosis came after I had spent some time in the Netherlands teaching. I had been experiencing some unusual sensations where I felt numb from the waist down. Oddly, I could still walk, I just couldn’t feel anything. At first I thought it was the cold… but I couldn’t feel the heat of the shower either. I also remember feeling absolutely shattered – but to be honest, I ALWAYS felt like this, and put this down to working hard and being away from home.
When I came back to the UK, I was told that my vitamin D levels were really low which was likely the cause, and so was prescribed that by my GP at the time. I remember feeling incredibly relieved –
“thank god it’s only a low vitamin level!”
I continued life as normal, and actually the feeling in my legs came back a bit. A few weeks later, I started getting really odd sensations in the whole of my body – kind of like I was a mobile phone vibrating. If any one touched me, I could feel the vibrations throughout my skin. I also noticed that if I put my head down, a bizarre electrical sensation shot down my spine. This was not normal… (I now know that this is L’Hermittes sign) so I went back to the doctors again. She did some physical tests and I was sent up to the hospital immediately.
Strange thing is that I wasn’t really that worried. I had been dismissed so many times, I genuinely thought that it would happen again. I think that is what took me by surprise the most when my MRI scan came back with inflammation on it and the consultants started looking in to possible causes.
A diagnosis at last
I think I felt numb when I heard the news about having MS. From the symptoms in the Netherlands onwards, things went from bad to worse, and I had a number of relapses back to back with no time for recovery. I genuinely had no idea what the future held for me and the outlook was pretty bleak.
A game changer
BUT I was quickly started on natalizumab and it has been a life changer. It isn’t perfect, and there are still relapses, but things could always be, and have been worse. My story of how I bounced back, and what it took to get to where I am now continues… hoping to share some of that in my blog.