Feeling the heat

Well, last week was a scorcher.

So much so, that I gave up on Fathers’ Day activities halfway through the afternoon and went to bed for a bit. The following day, I dressed for work, drove my youngest to school, and then turned round and headed back home I felt so rough.

Again, I had an hour’s kip during the afternoon. After this I felt brave enough to step outside into our south-facing garden with some crazy idea about hanging out some washing.

Stepping out of the back door, I felt sure, was pretty similar to stepping off an aircraft in Saudi Arabia.

I turned round and went back in.

I felt so fatigued, dizzy and achey that I even Googled to see if I’d given myself cyanide poisoning. I’d made elderflower cordial, and elderflower and gooseberry jam a day or two previously and the stems apparently contain cyanide (in the same sort of way that apple pips do).

To a paranoid, heat-addled, MS-scarred brain like mine, it’s pretty amazing how similar the symptoms of MS and elderflower-induced cyanide poisoning are.

Tuesday, I was pretty much right as rain, so I ventured back to the office knowing that I could leave any time I needed to, and on Wednesday I’d booked a day off anyway to attend school sports day.

My youngest daughter’s school sports day involves a lot of standing up and moving from one event to another. The weather reports said partial cloud.

After two and a half hours of hanging around in full burning sunshine, I ventured back to my car that I’d helpfully parked about a mile away.

It was then that I found it was incredibly hard to walk in any meaningful foot-in-front-of-the-other kind of way. As I was the first one out of the school gates, I wondered what the other parents thought of my stumbling feet; feet that felt like they were made from bags of sand, and legs that felt like they were wading rather than walking.

At least I’d had the forethought of deliberately parking somewhere shady. Slumping into the driver’s seat, I allowed myself a rare emotional moment – probably no more than a few seconds, but enough to release the weight of what I’d bottled up – before turning the key in the ignition and just getting on with the rest of the day.

When I eventually got home there was a letter from Big City Hospital waiting for me. It was my neurologist to say the results of my recent MRI were back. It showed new lesions, apparently.

Now here’s the interesting thing – my neuro’s exact words look designed to set my mind at rest: ‘a small number of small new lesions compared to the scan of three years ago’. For someone who proof reads as part of their job, the use of the word ‘small’ twice in the same sentence stuck out like a luminously sun burned neck. The scan of three years ago that he mentioned had itself shown no new activity since the previous scan when I was first diagnosed, so these are the first new lesions on a brain scan of mine in nine years.

Anyway, my neurologist didn’t think this ‘necessarily need prompt a change in treatment’, but he’s asked that I come in to see him anyway ‘to discuss’.

Hmmm… all well and good if I’m being summoned to ask questions and set my mind at rest, but there’s also a little part of me that feels a little worried.

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Divots

Well, I’m currently considering my medication options…

Copaxone is the front runner at the moment. Mainly because the other meds available have unpalatable side effects for not much gain, it seems. They might repress the immune system too much as well. I don’t think killing off all my white cells is an option when I have two small kids and a wife who’s a teacher all bringing the world’s germs into the house.

I’m waiting to hear from my neurologist to find out what might be available to me. I had an MRI scan last night to help inform that.

A colleague has been accepted on the hookworm trial, which sounds very interesting, but she is treated at another hospital.

I had a meeting with my neurologist a week or two ago to discuss the whole matter. He seemed to be dismissive of the beta interferon blues and said it was the injecting/flu-like side effects blues instead.

I’m not so sure. Apart from some achey joints once and uncontrollable shivering twice, I’ve never really felt flu-ey. I’ve only ever felt MS-ey.

I allowed myself an inward smile as he described how copaxone might leave it’s mark on my body: “divots like a poorly maintained golf course.”

Now I know where he spends his weekends.

Making lemonade

“To make lemonade out of the lemons life throws at you, you sometimes have to strangle kittens.”

Somebody tweeted that recently. Oh wait!… It was me! I tweeted it!

Why?

Because to aid a restful night’s sleep and to stop myself getting urinary infections, I will now have to self-catheterise every day, at least once a day, for the rest of my life.

Hooray! MS rarely gets sexier than that, eh?

Oh well, something else to put on my health CV.

So what’s happening?

I went to the hospital for my yearly check-up this week. I had to have a bladder scan after my usual neurologist appointment. Despite this, I needed a wee really badly when I finally got to the clinic and I used the loo before I’d even checked in at the desk. I’m sure you won’t mind me saying – it was a nice big wee.

45 minutes of waiting room passed as all sorts of MS patients came and went. Some who looked fitter and healthier than me to those in wheelchairs. MS waiting rooms are funny places. I always sit at the back, so I can look out over the city (the clinic is on the 11th storey of a hospital on top of a
hill). I always feel like I’m being weighed up by the other patients when my name is called and the very slight limp I have and the clumsiness I feel as I circumnavigate all the chairs seems amplified all of a sudden).

After my usual questions with the neurologist I got to see one of the MS nurses. Not my usual one.

He scanned my bladder – I had about 640ml of urine in it. I was just about ready for another wee, so he gave me a bed pan and off I went to the loo again. Again, it felt like a nice satisfyingly big wee. As it trickled to a stop I had a slight residual feeling there was more there but the feeling passed and I couldn’t go any more.

The reveal moment came when he told me that I’d managed to pass 120ml of that original 640ml and sure enough the follow up scan revealed that I had about 500ml of wee still inside me. To put it in context, a bladder can hold up to 1.5 litres, so that pint of wee I’m carrying around everywhere is about a third of a bladderful.

I think I can say I was mildly shocked.

Anyway, treatment options were discussed and we both decided that self catheterisation was the way forward. This will involve passing a thin lubricated tube, about a foot long into my bladder every day, once or twice (or more) a day.

It sounds potentially painful, but to his eternal credit he intimated that he’d tried catheterising himself to see how it felt. Just so that he could talk honestly about it to his patients. I felt completely reassured about it and I’m sort-of looking forward to the nursing team who will visit me in the next
week or two to show me how it’s done.

Actually, I’m not looking forward to it at all, but if it needs to be done, it needs to be done, and I’ll have a follow up appointment with the MS nurses in a month or two to see how I’m getting on.

A lot is said about specialist MS nurses and how great they are, but let me say this… I have received care from my MS nursing team for about five years now and going to see them is like going to see a good friend. Even though I’d only met this nurse for the first time, we had a long chat about music, bands we’re both into, cycling, drumming, vegetarianism, local neighbourhoods I wanted to explore after my visit and so on… He even made me a cup of tea. Despite the white coats and the technical equipment hanging from the walls, I completely forgot I was in a hospital.

I said as much on the online hospital feedback form the next day – credit where it’s due, and all that.

Travelling the ten or so miles into the big city and the usual pains of parking spaces, students and traffic congestion put aside – it’s always a pleasure to visit. Long may it continue to be so.

Three cheers for MS nurses!

Incidentally, I nearly chose “Taking the piss” as the title for this post, but felt that would have been unfair.

More soon…

PS – the shaking I experienced recently, didn’t tick the boxes of a fit, but may have been some residual dream-movement, like I thought.

The eyes of the monster

Regular readers may know that I have had doublevision ever since my last big relapse in 2008. Every time I look left I see double. Looking straight ahead I’m fine and looking to the right, results in a textbook case of nystagmus (shaky eyes).

Doublevision is the reason I saw my GP in the first place. It coincided with a lot of other symptoms I was experiencing at the time, but I think if I’d had a severe case of tingly hands and feet or fatigue, I’d have probably let it ride. Doublevision is a more concrete sign that something somewhere is well and truly not right.

Back in 2009, I went to see my local orthoptist at my hometown hospital, to see if I could get some corrective prism lenses. Despite doing various tests all afternoon, and despite the fact that I only wanted lenses for specific situations, I was turned down. Apparently my 20/20 eyesight was too good to ruin with lenses, albeit plain glass ones.

At the time, it affected me more than I had expected because I was very surprised 100 yards or so later down the road to find myself suddenly bursting into tears.

I think this is the one and only time I have ever been truly upset about having MS.

But it’s the helplessness of the situation that does it… Yes it’s being turned down for something small that could considerably improve my quality of life and yes, it’s being patronised by a grinning medic demonstrating how to turn my whole head if I want to look left. But the one thing that really bugs me is that it’s always there and it’s always the same and I’ve had to get used to it whether I like it or not.

Today, I feel slightly different to how I did yesterday. I was more fatigued yesterday, and I was clumsier. My fingertips were more tingly and I had a bit of pain in my legs which I don’t have, so far, today. On the other hand, I have been having some muscle cramps today that I didn’t have yesterday. I find I have to take my MS on a day to day basis. Over time, it’s been more or less the same, but the symptoms ebb and flow subtly all the time.

The doublevision doesn’t do this. There’s been some permanent damage somewhere in my brain stem, so that when I look to the left there’s always the same displacement.

I’m looking directly into the eyes of the monster.

It reminds me how futile it all is and how helpless I am. The doublevision is a constant reminder of how my life has irreversibly changed.

Anyway, moving on two and a half years, I brought the orthoptics experience up with my non-plussed neurologist at our yearly meeting. “Would you like a second opinion?” He asked.

“Oh! Erm… yes please!”

“With our guys or the guys at [your hospital]?”

“Definitely your guys.”

“OK, I’ll write them a letter and we’ll get you seen.”

Four weeks later and I arrived at the eye clinic at Big City Hospital expecting to fight my case. I had drilled myself with the things I wanted to say about how prism lenses would make a difference when driving, or at the supermarket, or in meetings, or watching late night telly, and so on.

My first surprise was that I turned up 20 minutes early and was seen straight away.

The second surprise was the opening gambit from the orthoptist: “OK! Please take a seat. Today we’ll look at your eye movements. We’ll get you to look through some lenses. I’ll take some measurements and we’ll consider some treatment options for you. But today we should get you fitted out with some prism lenses to take away with you.”

Wow!

“Are you sure?” I filled him in on my previous experience including the turning my head to the left demo, how they had made me feel and how I was told it would strain my eyes and so on.”

He just shook his head and smiled in an ‘absolute nonsense’ kind of way. “No, that’s not true, we’ll try you out with some prisms.”

After that we got on like a house on fire. I learnt a bit about eye physiology as I had lens after lens passed in front of my left eye and he explained about the muscles that control my eye movements.

The upshot of it all was that I have some rather lovely NHS specs with prisms on the left lens which improve the doublevision only slightly in terms of the field of single vision, but massively in terms of  everyday practicalities and, perhaps more importantly, morale.

After my appointment, the morning sky looked a brilliant blue, the sun shone off the windows of the hospital towering above me and everything seemed different. I had been listened to and I had the result I wanted without having to battle for it. The world was a better place and again, I felt a little emotional.

That was all about six weeks ago. I have a follow up appointment this Tuesday followed directly by a meeting with an eye surgeon to explore my options (I’m thinking that these options will involve detaching and reconnecting eye muscles). Of course I have a whole raft of questions I need answers to, if I’m to go down that route, but I’ll keep you updated with whatever happens.

I might be staring into the eyes of the monster, but this time it feels like I’m staring it out.

Relapse

Just thought I’d let y’all know that I had a relapse in the last couple of months.

It mainly involved vertigo and dizziness, so I spent a good couple of weeks crashing into things, nearly falling over, feeling nauseous and actually vomiting a few times. It also involved some fatigue, L’Hermitte’s and a not unpleasant hot sensation near my right ankle.

GP reckoned it was labyrinthitis to start with, so he gave me some drugs for that, to see if they worked even though my MS history has been peppered by vertigo. They didn’t, of course, so instead of going back to him, I went to my neurologist. One Dix-Hallpike manouevre later to eliminate BPPV and my first relapse for three years was confirmed.

I was prescribed steroids, but I didn’t take them in the end as I felt I was getting better and I didn’t fancy a week of the side effects.

Thinking about my GP, I asked my neuro about the possibility of an ear infection…

“Can you hear that?” rubbing his finger tips together next to my right ear.

“Yes.”

“And that?” next to my left ear, this time.

“Yes.”

“Do your ears hurt?”

“No.”

“Then it’s not an ear infection.”

So there you go. It was inflammation of the balance centres in the brain stem apparently. I’m very much better than I was, though I did have a funny turn yesterday so I reckon it’s there in the background somewhere.

Neuro update

I went to see my new neurologist last month at big city hospital. Like my last neuro, he is another twinkly eyed, amiable bloke. My last neuro- has a vastly increased workload apparently. Either that or he’s too wrapped up in his trials and research (which I have consistently turned down the chance to take part in).

The consultation involved him muttering about registrars not being up to their jobs, simultaneously finding a supposedly missing reflex in my arm and striking through some notes in my file.

I asked him about the permanence of my doublevision in the inevitable Q and A.

It seems that it probably is permanent, but you never know…

Lightning can strike twice in MS, in terms of the parts of the brain it affects. I know this from what I have read online and in literature. This is why you tend to get the same symptoms re-appearing over and over in relapses and the gradual worsening of symptoms over time.

With this in mind, apparently a future relapse could involve the formation of a lesion in a similar part of the brain stem which caused my doublevision in the first place (get this…) cancelling out the first lesion and setting my vision straight again.

That’s something to look forward to, eh?

When I reported back regarding my local orthoptist’s opinions regarding corrective lenses, he seemed skeptical, promising to get a second opinion from the big city hospital opthalmology department.

That was nearly two months ago, now. I still haven’t heard anything.

Mild relapse?

I have been on beta interferon (Rebif) for nearly two years now and in that time I haven’t had a relapse.

Or have I?

Beta interferon is supposed to reduce the likelihood of having a relapse and minimise the effects if you do get one. Back in January 2009, when I came off gabapentin, I experienced a temporary worsening of symptoms such as fatigue, pain, heavy legs and one instance of flashy lights in front of my eyes. Was it a minor relapse as the neurologist thought? Was it the side-effects of coming off the gabapentin? Or was it the underfoot rumbles of the MS volcano?

I don’t know. I suspect all three depending on when you ask me.

I have a similar thing going on at the moment. In addition to the usual symptoms, I have had a couple of weeks where I have had a worsening of pain in my arms especially, mild spasticity in my left arm and both feet, hands that feel as if they are gently transporting a cactus as opposed to the usual background tingle, heavy legs again, fatigue, mild vertigo, uncontrolled movements in my calf muscles and last night, definite phosphenes in my right field of vision as I moved my eyes around.

So is it the hot weather?

Is it the MS Monster rolling over in it’s sleep?

Or is it a mild relapse?

I’m not inclined to bother anybody about it until my next yearly meet up with the neuro. My neuro is “running late” this year, apparently. Running late in the sense of he can’t see me in June as would normally happen, but will be able to when his appointments begin again in August, and the 115 people in front of me in the queue have been seen first.

In the meantime, I have restarted taking the amitriptyline.