History repeating

I relapsed again just before Christmas. It's been a merry festive season.

This relapse is an almost carbon copy of the one I had earlier this year. It's mainly sensory, so: MS ruddy hug, scrambled sensation from neck down, tingly hands, numb bum, tiredness. So far, so familiar.

But while my feet escaped in May, they haven't this time and instead I genuinely feel like I'm walking on broken glass.

This relapse also appears to have taken the damp clothes sensation of earlier this year and upped it to a sandpaper scraping legs sensation.

It's all completely rubbish, obvs, and makes wearing clothes hugely unpleasant. But as I need to leave the house for work/school run purposes and have no desire to affront the general public, horrible feeling clothes it is.

As a slight plus though - my legs might feel they are being attacked by sandpaper, but they also can't feel the cold. A bonus for those non-work days when I am wearing shorts in the winter. Have learned to ignore the stares.

However, this two relapses in six months tally does only mean one thing - and that is a review of my current meds. As my neurologist depressingly puts it 'the DMT is not holding things at bay'.

So it's a case of gearing myself up to face the new meds choice. I am both immensely grateful that I have some options and hugely bewildered by what those options are.

I never feel qualified to decide what is the best thing to do. I really, really need some help, support, guidance and a me from the future telling me the most effective option.

As a minor aside, I also need to stop eating all the leftover Christmas chocolates.

Things I hate about MS relapses. A grumpy pie chart:

:: History repeating by Propellerheads feat: Miss Shirley Bassey

What's going on?

Multiple sclerosis is a disease of questions.

What is happening to my body? Why is it happening? Why is it different for different people? When will I relapse? What will happen to me in the future? Have I done something to cause it? Why isn't there a cure? Can someone make me a cup of tea?

As a former journalist - and all round nosy person - I have asked these questions a lot.* 

And my role as the communications volunteer with our local MS group now allows me to ask the questions on behalf of others too - and share the answers in our quarterly newsletter.

I try and interview someone medically knowledgeable each edition, and autumn was the turn of our neurologist.

Here's one of the Q&As from our conversation. It's very interesting and may (or may not) be reassuring:

Q: What interests and frustrates you most about MS as a condition?

A: There are a large number of puzzling issues about MS which make it a very unusual condition. These include:

* why does it affect people in different ways - some people have a pretty 'benign' course, others have a terrible time

* some people recover extremely well from relapses, so why do others do badly?

* why is it so unpredictable? I have seen some people in their 70s have a relapse after 50 years of stability? 

* why do men and women have a different pattern of MS? 

* how does pregnancy - at a fundamental level - affect MS? 

* when/at what stage is it appropriate to give the most powerful disease modifying therapies? 

* what is going on in "true" progressive MS? 

The frustrations are mainly to do with a lack of resources (funding, facilities and people) to support people with MS, a complicated and pretty unsupportive benefits system and the complicated rules and protocols that have to be followed when considering therapies for MS. The lack of approved treatments for patients with advanced forms of MS is particularly difficult.

:: What's going on? by Marvin Gaye

* especially the last one

Black cat

I had an 18-month review with my neurologist recently. As a result of which, I am oscillating (what a great word) between two emotions.

The appointment went well – hurrah.

The appointment went well – immediately superstitious.

I did all the little tests pretty well:

• Strength, good.
• Getting up off the floor without using your hands, ungainly, but good.
• The one where they poke you with a sharp thing to see if you can feel it, good. (This has not been good for nine years. I have no idea why feeling has suddenly returned, but it has.)
• Balance and eyesight – not so good, but you can't have everything.

My neurologist declared it was the most well he'd ever seen me. And I've been seeing him for six out of my 14 diagnosed years.

I should be cartwheeling around the room, but the problem is that the last time he said I was doing pretty well, three weeks later I was in hospital with an almighty relapse.

I'm fully aware that there's not an evil link between what he says and what my immune system decides to do, but I'm more than a little superstitious about this.

Funny isn't it? We spend so much time battling bad news and dealing with the utter guff that MS throws us, that we should be utterly delighted when the news is positive.

And I am. I'm extremely grateful. I'm also quite scared.

I'm not completely sure why I have reacted with such trepidation. Was the news too good? Perhaps a part of me thinks that having a bad review will somehow keep other, much worse times, at bay. Perhaps I dare not believe it because if I do, I'll let my guard down and get walloped by the relapse stick again. 

The rational part of me knows this is all utter superstition. I'll either relapse or I won't.
But I've always been a bit of a one for touching wood or waving at magpies or looking for signs from the universe and I wonder if living with something so completely out of my control has made this tendency worse.

What this appointment has made me realise is that I'm finding it almost impossible to appreciate the happy medical news without thinking about what happened the last time I did.

However, I could well be worrying about how to deal with the good news for nothing. Just because the external signs aren't there, doesn't mean the internal progression isn't happening. So it's off for a head and spine MRI next week. Those stark grey images will be the real test.

In the meantime, I guess it's just carry on as normal. But perhaps I'll try and get as many black cats to walk across my path as possible.

Maybe that was the subconscious reason we rescued two black cats for re-homing. 

Does it work like that?

:: Black cat by Janet Jackson

Milk and alcohol

MS: Hey! Wake up! Wake up!

Me: Gggnnnnn. Wha...

MS: Come on sleepyhead, it's an exciting day!

Me: Gnn. What time is it?

MS: It's 3am!! Best time of the day, the world's all shiny and new. Come see, come see.

Me: It's WHAT time? Good God, what do you think you're doing? Go back to sleep.

MS: Can't! Too excited!!

Me: Oh great, I love it when you're in one of these moods. What now?

MS: Well, it's today isn't it? It's only here. After all this time, it's finally here.

Me: Erm?

MS: Oh you big sillyhead, it's today! It's only my appointment with that funny little doctor man who thinks he has all the answers about meeeee.

Me: You mean MY neurology appointment?

MS: Yes, that's right, my funny little doctor appointment. After 18 months, it's finally arrived. Oh I do love seeing him.

Me: Do you?

MS: Well, durrrr, yes. It's so funny the way he chats on to you about what's been happening and then makes you do all those tests that quite frankly make you look ridiculous....

Me: Err, thanks?

MS: ...yes, you know the ones: touch your nose with your finger but careful, don't jab yourself in the eye now. 

Or put one foot directly in front of another, try and walk in a straight line, whoops, don't fall into his desk, you clumsy muffin. 

Or when he jabs you with a sharp stick to see what you can feel – or not. 

Or, oooh, I like this one, cover your good eye and now read the chart. The chart. This chart, over here.

Me: Ah yes, those ones.

MS: Oh I do find them so very entertaining. It's like taking a desperately sub-standard show pony out for a stumble round the grounds.

Me: Right. Quite annoyed now.

MS: Ooooh, scared.

Me: Anyway, I think you'll find you've got it the wrong way round – it's me taking you out to be held up for inspection. I'm the one putting you under the spotlight to see what havoc you've been wreaking over the past year-and-a-half. To see if I've managed to carry on despite you, to see if I've managed to hold onto some semblance of sanity, self-respect or sense of humour and to see if the the meds I'm on are doing the trick of holding you at bay.

MS: Hmm, some interesting thoughts there.

Me: Well, er, yes.

MS: Veeeery interesting. They deserve some reflection don't they? Some time to dig deep, hold everything up to the light and really and truly and honestly explore how you feel about the possible answers... *pauses* Well, I'll be off now.

Me: Is that it? Is that all the input I'm getting, usually you're overflowing with irritating insights.

MS: Well, it's late isn't it. Or early. Oh look, it's 3.10 now – just enough time for you to sit awake and ponder on all those veeeeery interesting thoughts.

Me: Yes, I will.

MS: In the darkness. On your own...

Me: Erm, suppose so.

MS: Long time till morning you know. Lots of lovely time to think. Ah well, sweet dreams.

Me: Gnnnnnnnnnnnggggggghhhhhhh.

:: Milk and alcohol by Dr Feelgood

Comforting sounds

In what I am trying very hard not to make a festive tradition, I spent Saturday in an MRI scanner.

Close to the Big Day as it may be, the 17^th of December was actually pretty good - three years ago I spent an hour-and-a-half on Christmas Eve in one. And while, in comparison to many other medical tests, I quite like an MRI, most people would agree that there are limits to what they will do to get out of the festive shopping.

But the hospital had tried their best – tinsel around the weighing scales and height chart for the pre-scan measurements – and while I turned up prepared with my own CD, I couldn’t resist the option of having the hospital’s choice of festive music piped into the protective headphones.*

First song on was East 17 Stay Another Day which for some reason made me chuckle a lot, until I remembered that the first rule of MRIs is NOT TO MOVE unless you want a stern, disembodied warning voice cutting through the plaintive warblings of Walthamstow’s finest.

It was only a short one this time - just 25 minutes on the gurney with a cage over my face so I didn’t have too long to stay still. Or ponder on the confusing and mildly inappropriate nature of ‘I saw mommy kissing Santa Claus.’

The aim was to get an up-to-date scan of my brain to see what damage is already there before I begin my Tecfidera (which, incidentally, I still don’t have as my MS nurse is still not well.)

The results will form a baseline reference guide to check whether the new drug is working by highlighting any patches of new activity which shouldn’t be there if the drug is doing its stuff. Obviously if I get a relapse which has clear physical impact, I will know about it, but this will also help track and gauge those sneaky instance of damage that indicate silent deterioration.

I’m fascinated by how the varying grey and white patches are interpreted on these scans. I’m also endlessly amazed by how magnets make pictures which make medical meanings.

I do ask my neuro to go through my scans to explain it all and I try to nod knowledgeably while he patiently does so, but as with a lot of things I can understand it for a while before it wafts off into the medisphere and I have to ask him to go through the whole thing again the next time I see him.

I suspect I am not alone in this so I don’t feel too bad. And I can always blame the big white and grey mush he sees on the screen before him.

The only thing I find mildly disappointing about the scan pictures is that my head is not actually sectioned liked the Numskulls with expanded areas for gin drinking, obscure song lyric retention and knowledge of useless trivia.

If I had an MRI scanner that’s what I’d programme it to do. And that would be worth 90 lying still minutes of anyone’s time.

:: Comforting sounds by Mew

*These, by the way, do not block out the repetitive clanking and banging of the magnets, they just dull it a bit. I do know people who drift off to sleep in the scanner – possibly understandable it’s warm, you have to stay still – but I’ve never managed it myself. Perhaps a skill to develop over the next few years as there will inevitably be more close encounters with the tube.

You can't always get what you want

I saw my neurologist on Wednesday.

It was the day we woke up to the previously unthinkable news that an orange-faced, insanely-coiffured, intolerant misogynist had been voted into The White House.

And while I leave the political commentating on this almighty mess to people far better qualified than me, I felt it didn’t bode well for the meeting.

But we had the usual chit chat, review of the past few months and those tests that only happen in a neurologist’s office and are, I suspect, designed simply for their amusement.

Nowhere else would you get a person struggling with their balance to be told to close their eyes, put their feet together - and not fall over.

Or with eye damage to put your finger on their finger and touch your nose – without poking yourself in your good eye.

So after the serious medical exam/free comedy sideshow I brought out my list of questions and he went through them all very patiently and calmly.

No, he knows I don’t usually ask this but can’t give an idea of life expectancy and really I need the view of a financial adviser to decide whether to leave my pensions where they are or take them out and go mad on an overseas tour (although possibly not to see our American cousins.)

No, that odd waterfall feeling I have isn’t nerves regenerating but is more likely to be a migraine phenomena (phenomenon? phenomenal? pheremone?) – although part of me is still liking the original explanation so I may hang on to that one.

No, the thing we’re vaguely thinking of doing won’t necessarily be affected by my MS.

Yes, I need to change – and by change, he means upgrade - my medication.

I’ve really, really struggled with this decision. Firstly whether to change, although all the advice and evidence points to the fact I should. And secondly, whether it should be Tecfidera or Gilenya.

In the end – after a few months of research and/or looking for signs from the universe - I’ve gone for Tecfidera – on the basis that it’s almost as effective as Gilenya but doesn’t have quite as many side effects that quite honestly scare me half to death.

So now it’s off the Avonex for four weeks and, assuming my bloods are okay, onto the tablets.

I just need to work out a timetable of when to start – especially as we’re heading towards Christmas and although I’ll be off work for the first tablets and potential side effects, it does run the risk of impacting festivities.

Like the news we woke up to it isn’t necessarily the situation I want to be in, but quite clearly we can’t always get what we want.

:: You can’t always get what you want – The Rolling Stones