Almost everyone I meet who has MS will say that they were diagnosed X number of years ago but have had it Y number of years. It seems that MS can be a beast of a condition to diagnose and I feel quite lucky to have had a relatively quick diagnosis – it took just 9 months from the moment I realised something quirky was going on to That dreaded moment back in 2010.
Or was it only 9 months?
Had I actually been showing signs of MS for much longer?
Next in my ‘Ten’ series I explore 10 signs of MS before I had MS.
1) Heat Intolerance.
Flicking through my university diary I was struck by an entry dated Wednesday 5 December 2001, during my first term living on campus:
“It is really hot in my room. The sun shines through my window really intensely during the day so I have to keep the curtains shut, which makes it a bit gloomy. Also, I don’t know how to work the radiator and it is always on… I keep having difficulty sleeping here lately, I get hot in bed and my legs ache.”
Ok, so it’s not the juiciest of diary entries (I won’t be sharing any of that!) but I’d forgotten just how unbearably hot that little room was. As with a lot of things on campus, the radiator and the windows were controlled externally. By which I mean that the windows would only open a few inches (presumably to prevent drunken students falling to their death) and the radiators were on set timings. My colleagues will be all too familiar with my gripes about being stuck in a hot office, it is THE worst environment for someone with an intolerance to heat, I just hadn’t realised that I was showing symptoms of this so long ago!
(My room on campus – yes, that is a Harry Potter duvet set)
During the summer of 2007, aged 25, I was at the peak of my fitness. I was in training for a huge cycle challenge and was kicking butt at the gym daily.
Having cycled the 4 or so miles to my summer job at the delightful McLauchlan’s fruit farm https://www.boxtedberries.com/ , where I had worked every summer for the past decade, I was tasked with undertaking some labour on the strawberry fields. I’d done plenty of odd jobs at the farm over the years, from fruit picking and manning the shop to pruning at the close of the season. This shouldn’t have been too taxing, and yet it broke me. My legs were in such pain afterwards that I could barely walk for a few days. I even feared that I would never walk again; looking back, I really was very dramatic about the whole thing! In the end I put it down to lack of fitness; but I know that feeling in my legs, I have that feeling in my legs 24/7 now. Was this a precursor to my MS?
We’ve all been there. No-one is immune to the odd humiliating trip when out in public. Everyone will have tried (and failed) to cover it up with a graceful twirl as though they’d intended to spontaneously burst into clumsy hippo dancing.
People with MS are notorious for tripping over.
And so, in the winter of 2007 I arrived at the entrance to my workplace in Soho at the same time as the beautiful, glamorous PA to the Executive Producer at the television company where I worked. No big deal, we’ve spoken loads of times, a little bit of small talk won’t hurt as we make our way up the 3 flights of stairs together… Next thing I know my Converse leaden foot has refused to lift up a step and I fall flat on my face, landing at the feet of the beautiful, glamorous PA (who feigned concern while secretly stifling a smirk). A sign. Surely.
4) All a blur.
I couldn’t possibly put a date on when this next one started up. I’d been experiencing problems with my vision for years and had always put it down to an issue with my contact lenses, which I’d been wearing all day every day since I turned 18. Turns out, it was MS related, indeed, it was probably my first symptom of MS, as visual disturbances so often are. Nowadays, when my vision goes awry, I know it is likely to be because I am over tired, over heated or over stressed (all causes of a flare-up of symptoms).
5) Trapped Nerve.
My first symptom to appear and stay was pins and needles. Starting in my arm when I woke up one morning over 10 years ago it has never really left me, just hopped about from limb to limb with varying levels of intensity. My first thought was that it must be a trapped nerve, and I gather that this is the same thought for many other MSers who experience the same thing. Why else would a perfectly fit and healthy young woman develop such a niggle?
Why else, indeed?
6) Wonky walk.
Sometime during the year before I was diagnosed I was walking along the corridor that led to my office at work. A walk that I had done countless times before without incident, it was, after all, a matter of only a few metres in length. But on this particular occasion, just as a group of managers emerged out of the office, my legs veered off to the right and I walked straight into the wall.
My husband has often said that living with me is like living on a ship, or at least I make it seem as though we were on a ship each time I lose my balance or cling onto furniture to get around the house.
7) Stabbing headaches.
This is another of those symptoms that has always been with me. I have no idea when it started, but for years prior to being diagnosed I thought it was normal for my brain to be sporadically attacked with a pick-axe. These ‘headaches’ are usually fleeting, but have the power to stop me in my tracks whenever they occur.
They are not normal.
See previous post: https://thewibblydinosaur.com/2019/06/18/the-lightening-scar-headache/
8) Restless legs.
In the autumn of 2009 I sat in the auditorium of the theatre where I work enjoying a wonderful new production of ‘Rain Man’, starring Neil Morrissey. It was a snappy play, and one that I would have thoroughly enjoyed were it not for the unbearable pain in my restless legs. I have suffered the same trauma at the theatre, as well as the cinema, many many times since, but this was the first occasion that the enjoyment of a show was to be truly blighted by that dastardly MS, before I had even the vaguest idea that I had it.
9) Running legs.
I couldn’t tell you when I officially stopped being able to run, but I do recall an occasion where I tried to run and was surprised to find I couldn’t.
Summer 2010 – I was in Disneyland and needed to catch up with my dad, who had wandered off with our room key. By this point I was well on the road to being diagnosed, and when I set off to run my legs just wouldn’t move properly. I managed a painful jiggedy, jaggedy sort of hobble across the Magical Kingdom, and I haven’t run since (despite multiple attempts).
You know when you just don’t feel right?
Well, I just didn’t feel right.
And I still don’t.