Me and MS

Me & MS

This is a story about me and HSCT though it may help to know how we got to this point…….(the short version which probably isn’t so short but please bear with me).

I was just a reasonably healthy middle-aged (eek) wife, mother, wicked step mother, HR professional, amateur masterchef and mad cat lady.  Who knew I'd get ill......

It was October 2004 – my Dad was visiting from the land of sunshine.  I’d had one of those busy “working mother” days.  A day at work, running around after teenagers – running my daughter to the horse yard (loved that bit – get to pat a pony).

I remember it well – I was sat at the dining room table chatting with my Dad, a glass of wine in one hand, brie and baguette close by, when I developed a sudden headache, felt a bit odd and the right side of my face went numb (think dentist type numb face).  Off I went to bed with codeine assist, leaving himself and my Dad to sort the worries of the world – it was in safe hands.

In the morning the headache was gone, the feeling in my face was also missing in action.

I like to give most things (and people) some time to get over themselves so three days later with still a dead face, I headed to the GP.  He diagnosed a “virus” (which is GP speak for “I haven’t a clue”).  Told me to come back in a week if I wasn’t better. I returned a week later still with dental block face and by this time completely numb left arm.  First question “do you have private health insurance?”.  Thankfully yes (thank you work) and an instant referral to a Neurologist, the lovely Doctor N.

Thereby started a round of MRIs, lumbar puncture, cardiologist etc etc.  I was officially diagnosed with RRMS in July 2005.

Now mostly it’s nipped around my heels save a memorable year where it took the sight from my right eye (left eye is lazy) so had to give up driving and reading for the best part of a year.  Despite one eye guy telling me it wouldn’t recover, my optic nerve is made of very stern stuff, it took a while but recover it did.  I celebrated by buying the car I’ve always wanted – isn’t she pretty?  I don’t have her any more (read she was a money pit) but better to have loved and lost etc etc……

I’ve been on two types of drugs to contain MS, the last four years on Tysabri (Magic juice) keeping MS in check. In September last year I went to my normal monthly infusion complaining that I was “walking like person with MS”.  All kind of wobbly and falling overish – and I had to give up wearing heels – very serious from a girl who owns in excess of 100 pairs!!  MS had clearly decided nipping about my heels was boring and started to flex its muscle.

An MRI was duly ordered and the lovely Dr N frowned a lot when he saw the image of my cervical spine, announcing there was “significant disease activity”.  I had failed on the magic juice (I didn’t take it personally!).

At this point he offered either another drug or a stem cell transplant. (HSCT). A tried and effective treatment for some types of cancer but fairly new for MS with some encouraging results.  Having googled “cervical lesions” and “MS” and the likely progression, the word starting with “Q” and ending with “plegia” was a bit too common for my liking.  I said to him “isn’t it a treatment of last resort”, he replied “sorry to be so blunt but it could be a good option for you”.  He’s the one with the “ology” and all the certificates on the wall, so to be trusted I think.

So here I am feeling very lucky to a) have the medical care in place to have identified the problem and b) blessed to be under the care of one of the leading Neurologists in the UK who is championing this experimental treatment.

It’s going to be brutal, grim at times and not without risk but hey – I need to wear these!