Showing posts with label Dx. Show all posts
Showing posts with label Dx. Show all posts

Monday, 22 July 2013

So it finally happened after all...

They said when it all got confirmed that I might find it easier if I set up a blog.  They said it would give me a forum to share my story but importantly to help me remember what is going on!  I found the blogs that I have read very helpful in dealing with the rollercoster that is MS, so thank you all!

As I sit here now hiding from my old best friend, the sun, I can be quite grateful that I now have 6 weeks in which time I can recuperate after the hardest term I have ever taught and give my body a chance to put all the weight back on that I was trying to loose for that all important 'summer figure' or as I keep telling my friends, the 'mankinni body'!

It was as a teenager that I was first aware of the hereditary link with MS, probably not the best source, but well done Susan in 'Neighbours' for pointing that one out!  I now know that it is very unlikely to be passed on, but with my Auntie having had MS and my Mother having SPMS, I had my concerns. Watching the journey that my mum took from being invincible to wheelchair bound wasn't easy, but the one thing that I have learnt is that she is the strongest person I know and probably ever meet.

It was in 2007 during a hot build up to the summer and having drunk far too much the night before (pretending that I was still at uni!) that I woke up with the mandatory splitting head and wobbly legs, but this time it was different...I couldn't see properly out of one eye!  Now I know that I probably did get blind drunk that night, but not literally!  In a panic, I booked an opticians appointment, but he had no idea what was wrong and I felt that he almost didn't believe that there was a massive dark spot in my vision.  In seeing the doctor, he sent me to an ophthalmologist who confirmed after many odd tests (i'll come back to them another time -  I loved running around the hospital waiting room with electrodes stuck to my head!) that it was retrobulbar neuritis -  a classic precursor to MS :-(

So off I went and told the Mrs, which was difficult as she had seen my mum progress over the previous 5 years and then of course I told my mum and dad - that was hard.  In true parent fashion, they were positive that it would never develop and it is with regret that it eventually did.

The next 5 years was a frenzy of over analysing every odd feeling that I had outside of the ordinary and then trying to convince myself that it wasn't a symptom, it was normal, my memory wasn't getting worse, it was just age!  It was in October of 2012, however, that I eventually had to admit defeat and see a neurologist when I got the weirdest feeling that someone was pouring warm water on my leg when I looked down and that a colony of ants suddenly took residence all over my hand!  So I guess it turns out that all those odd feelings weren't normal, they were symptoms after all, boooo!  When I spoke to my parent's about it, my dad summed it up the best.."Oh sh*t", exactly what I was thinking!

So there it is, my journey to this point in brief.  Don't get me wrong, this really is a rollercoster.  For every down there has to be some massive ups, along with plenty of mini victories - one of which for me recently is the prescribing of Tysabri, something that I have been very lucky to be offered after some very ineffective alternatives.