Tag Archives: mri

Dec 08 2012
17 Comments
Symptoms and Treatment

MRI…Meh

I had a neurology appointment yesterday, to check how I’m getting on since the Alemtuzumab treatment I had in the summer. I always arrive early at hospital to have a wander round the shops in the main concourse and chill with a (revolting) coffee and a spot of people-watching.

I bought some bits and pieces from Boots, including a horrendously overpriced Jamie Oliver sandwich then wandered over to the gift /clothing shop. Who goes to hospital and buys cruise-wear? Or a new handbag?  I decided against buying a new sparkly, spangly scarf and went to W H Smiths and looked at the expensive books and bizarre range of food, including tins of baked beans (always makes me smile).

Anyway, I had some coffee with my mum and watched the clock tick round before heading off to the clinic. The appointment went well, although I had to go through those neurological tests again – you know, the ones similar to the tests American cops make you do when they stop you for drink-driving. Touch your nose with your finger and walk in a straight line heel-to-toe. Luckily, I am normal – and not drunk – and didn’t fall over or make a fool of myself.

However, the bad news is that I will need to have another MRI scan next year. If I had to choose between an hour-long  lumbar puncture and an MRI, I would choose a lumbar puncture any day. I absolutely loathe small spaces. I am claustrophobic beyond all reason. When I was a kid, my sister locked me in a wardrobe, went for lunch and forgot all about me. Pot-holing as a hobby fills me with horror.

I have had two MRIs and have no idea how I got through them. You’re given earplugs, fitted with a guard to keep your head still and told you can keep your eyes open and look in the mirror set above you. Er, not a chance. My eyes were squeezed shut the entire time. You go in head first and it is terrifying. The magnets whizz round making a racket and it’s freezing cold. Each time, I could feel blind panic rising and each time I chucked my  mind to a happy place, anywhere rather than in that Tube of Terror.

So I have seven months to prepare. I will do my yogic breathing exercises, employ visualisation techniques and pretend I am lying on a very cold, hard beach. Any tips from fellow MSers?

Tagged , , , , , ,
Oct 20 2012
Leave a comment
Emotions

My dad, his MS

My dad died in the 1970’s, aged 35, from complications arising from multiple sclerosis. I was four and a half. I don’t think I remember him, as I find it difficult to distinguish real memories from what I have been told.

Over the years, of course I missed my dad, but was it hard to miss what I had never had in my life? I pieced together his MS progression, picking up hints here and there. Back in the 1970’s, MS was often referred to as ‘creeping paralysis’ and was a deadly diagnosis. MRI scans were not actively used until at least the 1980’s, there were no disease modifying drugs and people like my dad were routinely written off and sent home to cope as best they could with what little they had.

I recently heard that my mum had invested her meagre savings into buying a serum from the Eastern-bloc, which would apparently halt, then reverse my dad’s symptoms. She paid a dubious middle man and her money, and the serum,  were never seen again.

Now I have MS, confirmed through two MRI’s, showing the progression of my illness in devastating detail. I have my pick of drugs. I have a whole MS team behind me and have been assigned a neurologist and MS nurse. There is physiotherapy, yoga, counselling and an incontinence nurse if I need her plus a whole raft of support groups and forums. Do I feel lucky?

Yes, of course I do. I was fortunate enough to be born into an era of medical expansion and discovery. Hopefully we will have a cure for MS within a decade. Whilst I was going through the diagnostic process – a tedious, frustrating, point-ticking process – I put a photo of my dad on my kitchen windowsill so I could see him every morning. ‘Thanks, dad’, I would say as I put the radio on. Of all the things you could leave me with, you had to pass on this. Cracking legacy. I was angry, furious.

In a strange way though, having MS made me feel much closer to my dad. With every new symptom – and there were many – I would align myself with him. Did he have this, did he have that? I felt as if we could have been kindred spirits. I may have his eyes, his mannerisms, his fearlessness, but that is only what I hear, what I have been told by other people. Now, I have something I know he experienced.

Is that odd? I hope that I can take every opportunity going, as my dad did not have the chance, or lifespan, to do so. If I can somehow honour his memory in this way, then I will do everything I can to do just that.

Tagged , , , ,
Newer posts →