Not a clue. I didn’t even know what it was. I’d heard of it but I thought it was something you were born with. No history of it in my family and I’d never known anyone with it (which has obviously changed now as anytime you mention it to anyone, they always know someone with it or who had it)
My first ‘official’ relapse was at the end of 1999. I woke up with double vision. It lasted three weeks. My doctor signed me off with a virus. I accepted it although I do remember thinking that no one else at work had this virus. Didn’t Google or think anything more of it really. I did go to the opticians though for the first time in my life!
Fifteen months later, after only having a couple of days off sick from work in that time, I woke up again with double vision and my balance was all over the place. I knew it was the same thing as last time because I’d had a huge weird dizzy spell the night before on both occasions. Doctor signed me off with an ear infection and gave me antibiotics. I went back a week later as I was no better. He signed me off with a migraine this time but went back through my notes and said “you’ve had something like this before so I’m going to refer you to a neurologist”. Still didn’t think anything of it other than I knew it wasn’t a migraine. I also didn’t know what a neurologist was either. My feet were also strangely numb and just cold all the time. Every morning when I woke up, I would be freezing so, whilst making a mental note to tackle some housework later, I would have a really hot bath to warm myself up. I swear I could literally feel my energy draining away in the bath and then I would go back to bed and sleep for the rest of the day. After a couple of weeks, I did start feeling a bit better so decided to go to Newquay for a weekend of drinking, dancing and not much sleeping. Genius! I started to get really worried on the drive back as the numbness and pins & needles had spread up to my middle and was now in my hands as well. My cousin died from muscular dystrophy and I just kept thinking about that, fearing my body was shutting down. I went to A&E as I was so worried. I was kept in for ten days whilst waiting for an MRI scan after being put through my paces. I remember I couldn’t walk in a straight line with my feet really close one after another and every time I was on the ward by myself, I would keep practising and I still couldn’t do it. All the doctors kept saying was they thought I had an inflamation on my spine and I convinced myself I had a tumour. MS was never mentioned. However, I was in a ward full of ladies having steroids for MS and talking and listening to them made me start thinking “I have this”. I mentioned it to my mum on one of her visits but, by the time I saw her again, I’d talked myself out of it as I didn’t have all of the symptoms they were talking about. In the meantime, she’d gone home, looked online and knew. Anyway, I had my MRI and then got called back in a week later for my results. I was on my own as I only got the call in the morning to go in that afternoon. After a three hour wait, I was taken to sit on a hospital bed on the ward I’d been on. The doctor went back over my notes and mentioned the word “episode” and that’s when I knew for definite. He asked me if I’d given any thought to what it could be. I said “yes, I’ve got MS haven’t I?” and he said “yes, we think so”. I asked if there was any room for doubt and he said no. And that was it really. I remember driving home and having a little cry but my the time my parents got to me in the evening (I’d only moved out a couple of years before) I was absolutely resolute that I was going to carry on working and wouldn’t be moving back home. I’d also just met someone three days before (what timing) and having call him with the news was probably one of the worst calls I’ve ever had to make. Amazingly, he hung around for eight years. We’re no longer together or in touch but he will always be special to me because of that.
My manager at the time was fantastic (my mum came with me and I think she was a bit scared of her) and I didn’t know anything about the DDA. I was a bit perplexed about why she was going to get me a car parking space at front of building, when my walking was fine, and asking me if I wanted to tell people…? When I went back to work, she stood with me whilst I told my team. A couple of the girls were crying, others who hadn’t heard were coming up joking about why I’d been off so long, lots of sympathy. To be honest, I was the only one who appeared to be upbeat!
I actually feel quite embarassed now that I was so lackadaisical and clueless about it all but I was one of those people that never really got ill and certainly never thought I’d be diagnosed with something like this at the age of 27. I never actually felt poorly either during those first two relapses - just a bit odd. I am very glad I was diagnosed so early though as it allowed me to make a lot of changes to my life - in 2001, I was working ridiculous hours, lots of stress, forcing myself to go to the gym every day, going out every weekend and getting totally hammered. No wonder my body freaked out so much!