Tag Archives: mri

Jul 08 2017
18 Comments
The Teenager

And Exhale …

exhaleAfter The Teenager collapsed in June, we were so lucky for him to be referred to a neurologist, thanks to the advice of one of the fabulous MS nurses.

Within the month, I was sitting with him in my usual MS clinic, him fidgeting on his phone, me controlling my breathing.

I had been there just the day before, for an MS nurse appointment, hoping for the results of my latest MRI scan (nothing yet, gah).

We were called through by a neurologist I hadn’t seen before and he instantly put The Teenager at ease. He took a detailed case history then ran him through an extensive round of tests, a little hampered towards the end by The Teenager’s exceptionally ticklish feet.

The upshot is, there is nothing obvious that would point to MS.

I let out the breath I had been holding.

However, there is something a little odd in his presentation so he is being sent for an MRI of his spine. And that’s fine, I can deal with that. I think. The neurologist explained about blood flow through the spinal cord and blockages. It could be a lot of things, but probably not MS.

What can I say? The relief is immense, for both of us. We just needed to know either way. His collapse was unexpected and shocking.

So now we can concentrate on his summer of exploration, that strange suspended time between A levels and University. Before he heads off on one of his many summer trips though, he has my graduation on Monday to sit through …

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Jun 06 2017
10 Comments
Symptoms and Treatment

OMG … MRI …

mriI had an MRI scan today to throw some light on my recent relapse.

I know the score now – I leave the watch and earrings at home, wear a sports bra (no metal clips), don a tatty old cashmere sweater (usually freezing in the tube) and took my best friend (where would I be without her?).

At the hospital, I mainlined caffeine before we made our way to the clinic.

Once there, I answered all the questions, disclosed my weight (state secret), confirmed I wasn’t pregnant (hah!), accepted the ear-plugs and laid down, squeezing my eyes tightly shut.

Ho hum. I was whooshed into the tube and had that momentary burst of panic, which I knew if I let it grow, would condemn me to squeezing the emergency button and calling a halt to the whole thing. Claustrophobia + MRI = gritted teeth and the promise of looking round the hospital gift shops if I make it through.

After a while of zoning out, working out a shopping list in my mind, I was slid back out and injected with a dye to light up any active lesions in my brain. Then I was popped back in again. More banging sounds, which I attempted to ignore and concentrate on whether I needed one or two courgettes and had I run out of loo roll?

I was slid back out yet again, fully baked, and rolled off the plastic tray I’d been lying on, relieved it was all over. Except it wasn’t. Someone lifted a huge plastic square over to me, like a massive head brace thing with bolt bits on it. A different head rest was put in to place. Ah, they were preparing for the next patient?

Nope. For the first time ever, my neck was to have it’s very own special MRI. It was terrifying. My head was locked in to place, like some Medieval form of torture and I was slid yet again back in to the tube.

This time it was even weirder. Far from being cold, I felt as if I was being cooked. The heat blossomed all around me and then a pressure started on my head, like a gentle crushing, but crushing nonetheless. Hmm. The panic took root and I frantically tried to recall the courgettes. Three?

Over the intercom, I dimly heard ‘only two more scans to go’, listening to a brand new MRI theme tune. I swear it sounded like some bloke saying, ‘dah, dah, dah’ to a backbeat of drums.

Finally, eventually, I was slid out for the final time. I was shaking as I popped the earplugs in the bin and fell against the wall as I tried to put my boots back on. I staggered back to my friend, went to the loo (pesky coffee) and set off for the shops.

My heart was beating so fast, I couldn’t decide whether to buy a coaster with ‘Live, Love, Laugh!’ on it or a pencil with a tiny windmill topper. I went home, images of courgettes following me like a teasing hallucination.

I hate courgettes.

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Dec 11 2014
8 Comments
Symptoms and Treatment

What Do I Do Now?

mazeI had an appointment with my wonderful MS nurse yesterday. The situation as it stands is: I was diagnosed with rapidly-evolving MS and have had two courses of Alemtuzumab, just before NICE licensed it for MS patients.

They recommend only two courses, whereas there have been people who have had a third or fourth course before NICE. Hmm. Can I have a third?

Please? Pretty please? I won’t complain about the hospital food?

Well….. Oh. Can I take anything else? I had a relapse in February?

Well, there is Tecfidera.

Yay!

But this Trust won’t give you it. Oh. Any new problems? The nerve  and muscle pain in my legs has increased terribly. Every single evening, I’m in agony. Thank heavens for my automatic car, lol (this is where, for some bizarre reason, I imitate driving a car).

Well, there is Sativex, licensed for use in Wales.

Yay!

But this Trust won’t give you it.

Oh. You can see where I’m going with this.

I asked about Tysabri. No good, as I’m now – thanks to Alemtuzumab – not deemed as having rapidly-evolving MS. Vicious circle? So what are my options? At the moment, purely symptomatic. I don’t qualify for any disease modifying treatments.

My health is deteriorating. I know it shouldn’t, given the Alemtuzumab, but I also shouldn’t have had a relapse seven months after my last treatment. Don’t get me wrong, without Alemtuzumab, who knows where I would be now, and I will be forever indebted.

I pleaded my case: it’s only thanks to this medication that I am still working, still taking cheek from The Teenager, have enrolled in further education. And still  manage to push the vacuum round every now and again.

No go. I left, by way of the WHS outlet, where I bought a trashy magazine to cheer myself up. Got to the car park and realised I  had left my card in the payment machine in WHS. Schlep back, cry a little when talking to WHS member of staff who finds my card. She says she sees it all the time. I buy a chewy healthy bar and leave.

Get back home, letting it all sink in. I had explained to my lovely MS nurse that I felt I was up against an egg-timer and  my time was running out. Could I see The Teenager through his horrible Nirvana stage and get him into uni? Would he ever get his hair cut? Would I complete my Masters? Without my beloved Amantadine, which combated my fatigue, I felt as if I was back to square one. Like an evil Monopoly game. Do Not Pass Go. Go Straight To Jail.

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May 05 2013
8 Comments
Symptoms and Treatment

In The Beginning, There Was Cake….

scrummy yummy cakeSome of you have asked how my whole sorry MS story started, so here is the potted version.

Like many things in my life, it began with cake.

Leaving a friend’s house after enjoying a slice (okay, two slices) of delicious cake. I turned to say, ‘thanks for the cake!’ but it came out as ‘thanks, Kate’. Odd. I tried again. Same thing.

I went home perplexed. The Teenager was away for the weekend and over the course of the next two days my speech deteriorated, I was exhausted and my balance was shot. I knew something was seriously wrong.

I eventually ended up in hospital, talking gibberish. The clues were all there. The overwhelming tiredness over the previous six months, the dodgy walking, the simplest tasks taking forever. Throw in a childhood in Scotland and a parent with MS and I guessed the rest.

I assumed I would be diagnosed there and then (ha!) but that was just the beginning. Until I had a further relapse, I was in Limboland with no idea how long I would stay there. It took a year to hear the dreaded words, ‘highly active/rapidly evolving relapsing remitting MS’.

That year was probably the worst of my life. The lumbar puncture was a vile, medieval torture, the MRIs were terrifying and I lost count of how many blood tests I had. I lay awake at night, rigid with fear, worrying about the future. A lot of people say the day they are finally diagnosed is both the best and worst day of their lives. I agree. After all the waiting, the anxiety, the fears, it was a relief to finally have some answers. But it doesn’t make it any easier.

My main priority was to keep life going on as normal as possible for The Teenager. I would sleep in the afternoons, setting my alarm so I was awake just before he got home from school, duvet tucked away behind the sofa. I hid my anxiety. I became best friends with the pizza delivery man.

Those were dark, dark days. They are behind me now and an uncertain future still lies ahead, but isn’t that true for everyone? And as for cake, well, it certainly hasn’t put me off…

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Feb 09 2013
20 Comments
My Ramblings

A Helping Hand in Limboland

sad stick womanSometimes I wish I could go back in time to that terrifying morning when I woke up and couldn’t speak properly or walk in a straight line. If I knew then what I know now, I would have been a very different person. For someone whose father had MS, I knew surprisingly little. I had no idea what  CIS was, what an MRI would show, why I had to have a lumbar puncture.

I was in Limboland. I might develop MS. Or I might not. It is a cruel waiting game. I didn’t understand the ‘multiple’ part of multiple sclerosis. I left the clinic after that first relapse utterly petrified. What was I to do now? I had been given a couple of MS leaflets and information about how to contact the MS team. But if I didn’t yet have MS, why would I be given that? I was bewildered.

I accessed a few forums, one dedicated to Limbolanders and I gained a huge amount of information (a very, very special mention to ‘Rizzo’ who was amazing in answering all my queries). The forums were a lifeline, but at a cost. A lot of people had been stuck in Limboland for years, some well over a decade. Despair and anger oozed from the forum. We were all in a nasty, dark waiting room and I would feel a painful stab of strange envy when someone posted that they had been diagnosed, and were now leaving us behind; they had the golden ticket.

I read everything I could about the McDonald criteria, ticking off the four points bit by bit. Finally (but only 10 months later), I had my ticket. My brain threw up more lesions, far too many and I was diagnosed. Possibly one of the best and worst days of my life.

I wish I had been handed a step-by-step guide to life in Limboland, clearly explaining the whole diagnostic process, the frustrations, the waiting. Could someone please publish this? Letting us know that you have to go through so much, from first relapse to eventual diagnosis. Break us in gently. Please don’t throw us in the deep end.

So, to everyone diagnosed with MS, look out for the Limbolanders. Treat them kindly. Be an inspiration and show them we are not so bad, it’s not so scary. There is a life after diagnosis. Aren’t we all proof of this?

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