Gloves off

Well, I knew I’d be tempting fate to say that I was feeling fitter and more mobile. It seems that the old MonSter has found a chink in the armour and has left its footprint behind in the form of a few new spots on the MRI.

My neurologist has decided to advise exactly what I wanted him to do which is to nuke the f**ker.

Even though they’re four or five small lesions, he’s decided that because I reported an increase in disability (decreased mobility) at our online meeting last autumn, we should take no prisoners.

He basically handed me a menu and asked what I’d like to try.

So, after a weekend reading the excellent info on the MS Trust website, I ended up talking to one of my MS nurses, about my choice. After about 15 minutes of life-affirming chit chat about music, life, Gideon Coe’s radio show, vinyl collecting and so on, my wife decided it was time to roll her eyes and tap her watch and we addressed the matter at hand.

So, in summary, it’s ocrelizumab that I’m going to go with, aka Ocrevus.

I’m choosing it because it’s one of the most highly effective DMDs available to someone with relapsing remitting MS and although it has its side effects – I’ll be compromising my immune system somewhat – that list is relatively short compared to the other main candidate Alemtuzumab. It’s the usual trick of deciding what’s effective and balancing the advantages against the disadvantages and the likelihoods against the will-never-happens and ocrelizumab tends to float to the surface more often.

There are a few bits and bobs to go through first. My neurologist needs to apply for funding and I need to provide some blood so they can do the usual liver and white cell measurements plus a few new ones such as a thyroid test and then it’s just a matter of getting booked in for the infusions. I’ve had my Covid jabs as well, so that’s a major hurdle over with.

Initially it’s a case of having the meds dripped into my vein over the course of a day and then returning for another session a week later. After this I need topping up every six months or so. And that’s it! No setting reminders on my phone; no room taken up in the fridge by boxes of needles; no worrying about packing for holidays. I’ll just turn up at the hospital on time and have a sit down for a few hours twice a year while I get pumped full of B-cell killing nastiness and Bob’s your uncle. I can even legitimately take it easy for a couple of days afterwards as the initial side-effects apparently take a while to wear off.

So, the potential side effects for me range from the less serious infusion reactions (the team at the hospital can slow down or stop the infusion if they feel it necessary) to the more serious ones involved with what will, after all, be a weakened immune system. I’ll be more prone to infections, particularly of the respiratory tract, for instance, so I’ll have to watch out for any persistent coughs, breathing difficulties and so on.

There’s also a minutely small chance of getting Progressive Multifocal Leukoencephalopathy (PML), a rare brain infection that the MS Trust reassuringly tells me usually leads to death or severe disability. I’ll know what to look out for though. I’ll be looking out for brain-related wrongness, or in other words, symptoms that sound like MS. Nice and easy.

So, there we have it. It’s been a while since I last had my defences breached so I feel reassured that we’re responding quite aggressively, and I also feel reassured that we’re not looking at Secondary Progressive MS which is what I had feared. To find out that there’s new activity on your scan, despite your best efforts at keeping the MonSter at bay, can be so deflating, but a plan of action does give a real confidence boost… Bring it on!

The eyes of the monster – part 2

Well, I went to see the eye surgeon.

The upshot of my meeting was that I’m not going to have an operation to correct my doublevision. I decided that it wasn’t worth it because I have what he termed a “complex squint” and any correction to my doublevision to the left would be offset by new problems to the right. The surgeon said he could perform the operation if I wanted it and give me single vision looking straight ahead but he couldn’t cure me.

I decided that I would rather stick with what I’m used to and avoid an unpleasant operation with its uncertain aftermath.

There is, of course, the consideration that my eye movements could be affected again by a future relapse and undo everything the surgeon did.

At least I can stare out the monster with my prism lenses. They’re not perfect, but they iron out my straight-ahead vision when I need them to. They have their drawbacks in that they’re not very good with computer screens as they blur the text and they’re not very good with bright light (direct sun or car headlights) as they tend to splinter any brightness into vertical lines.

The extent of my problems as they stand is as follows: I see double from the centre (I hold my head slightly off kilter to make up for this, apparently) and to the left. This gets worse as I look further to the left and I get a little nystagmus (flickering eyes) to the extreme left.

Rather than screw up one eye, I either turn my head or trust the image from my right eye and mentally switch off my left eye image when I look left, which is odd because my left eye is a little bit sharper than my right one..

I see single, slightly off centre to the right and then it doesn’t take long before I get a textbook case of very noticeable nystagmus (surgeon to student yesterday: “take a look and note that for your finals”) coupled with not so extreme doublevision to the extreme right.

When my eyes look up and down in the single vision field, they’re fine and when I look left and right, my eyes travel at slightly different speeds – there’s a little bit of lag in my left eye.

If the truth be known, I have to say the meeting answered a lot of questions and I’m relieved I don’t have to go through all that.

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.

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.

Life with MS – analogies

There seem to be analogies every which way you turn when you discuss MS with other (oh heck!) “sufferers”.

The most popular one must be the MS MonSter (see what I did with the letters?). The one that sits on your chest in the morning and stops you getting up, demands a piggyback if you travel anywhere, pokes you in the eyes, trips you up, ties extra knots in your shoelaces etc.

My very first post on this blog mentioned this fella. There is even an MS Society (UK) publication called “Shrinking the Monster” – the downloadable pdf of which I would link to if I could be bothered with their irksome, user-unfriendly website. It is actually, quite a useful and beautifully conceived document outlining various coping strategies for house-training the beast. (I’ll search it out and add to the links menu soon – I promise).

Another analogy I have mentioned before is the MS terrorist group, lying in wait within the central nervous system, ready to set off their explosives or kidnap your senses, sometimes causing permanent damage (like they did with my doublevision, the bastards).

Not a million miles away from that analogy is the immune system as Gestapo which I have heard bandied around a few times, though I can’t help thinking that the keystone cops is more accurate. It’s there to do a job, but ends up creating more havoc in it’s wake.

The graphic artist Johnny Hicklenton, who ironically I have mixed feelings about, likens his MS to being in a bad relationship. One day it’s all joie-de-vivre and happy happy, the next it won’t let him walk down the road to the shops, without causing him extreme pain.

My current thinking is from a perspective of someone in remission. MS to me right now, at this moment, is like living on a volcano. It has been a while since the last eruption, and my garden is starting to grow back (despite the solidified lava flow that I can see from the kitchen window). Things are generally good, but the odd rumble underfoot reminds me it’s only a matter of time.

Giving in

View of East Moor, Derbyshire - 8 January 2003

Yesterday I gave in.

I rang work to say that I couldn’t make it to the bus stop (one mile away up an icy hill) because of the weather.

In January 2003, I put my books to one side (I was doing a masters degree at the time), donned my walking boots and headed out of the front door to go for a twenty mile circular walk across the snowy moors.

I was pondering my future at the time, so I was in limbo as far as starting a family, or gaining proper post-graduate employment was concerned. My most immediate worries were house-hunting, coursework and finalising a dissertation topic.

My feet had instintively led me along a route I had planned on the map and imagined in my head numerous times as I had lain in bed at night.

I spent a happy day winding through local farms, along lanes that linked nowhere with nowhere, through copses, across the moors, past prehistoric barrows and back via a middle-of-nowhere pub.

I remember one particularly cool moment dangling my feet over a gritstone edge, watching the sun breaking on distant snow (see picture) while exchanging texts with a friend in her central London office.

I made it back as dusk was setting in, the fiery sun anchored to the horizon, mirroring my rosy-cheeks, satisfied and happy with the exercise-induced endorphins doing their thing.

I felt rather wistful watching the thaw setting in, dripping the branches and slushing the roads.

“That’ll be the last time I ever do that,” I muttered, quietly resolving to prove myself wrong.

Since then, a few milestones have been passed: I (post-)graduated, got married, found a job, bought a house, had two kids, lost my mother, extended my house, found a better job…

…got diagnosed with MS.

All this time, I have held onto the thought that one day, one distant crisp white snow day, I would do it all again. I would brush off my walking boots, wonder at the previous walk that had caked the mud into the soles, layer up, pull on the pack full of the day’s essentials (map, sandwiches, hip flask), and set off again across my beloved Derbyshire countryside.

Yesterday I couldn’t even get out of town.

Halfway up the local hill, the snow and ice got the better of me. Oscillopsia set in and my legs felt like lead.

Phoning into work felt like I had given up, like I had lost a key battle. For the rest of the day my legs and feet nagged at me in the cruellest way possible by feeling like they actually had walked twenty miles, but without the endorphins to show for it.

Still, I’m the optimistic type.

Part of me knows there are other factors involved – I had worn myself out after abandoning my car to the snow the day before. I had also walked, with a sledge in tow, the four and a bit miles – there and back – to pick up my kids (actually, I cheated and we caught a bus some of the way back).

I may have lost this battle, and I know that ultimately I will lose the war (how heavily or lightly remains to be seen), but there are other battles.

I am resolving again that when the kids are a bit older and I have the spare time, I’ll be taken with the urge and I will head out again across those hills.

I’m planning it now.

My MS History – Part One

Once somebody tells you, you have MS, you start to put a jigsaw together. You wonder whether that strange tingling sensation you had in your right arm last year had something to do with it, or in my case the vertigo diagnosis from the previous year and the little numb patch between my big toe on my right foot and the others.

It all happened at roughly the same time, but seemingly by stealth as I can’t put an exact time or even a date on it. My old office at work used to look out onto the rolling Derbyshire scenery. In the distance there was a radio mast on top of one of the hills. I remember looking up at that radio mast and hilltop one morning to see two radio masts and hilltops, but weirdly, only when I looked left. Also, when I hammered away at my computer keyboard, I noticed that my fingers felt a bit tingly. ‘RSI?’ I wondered.

I had recently had delivery of a new computer and I had shifted my workspace around and moved my desk from one side of the office to the other. When this sort of thing happens, my employer automatically sends a health and safety person round to assess how you are sitting, whether the new screen you have is causing any eye problems (“Yeah, well I do have this problem with doublevision”), or whether your seat is suitable (“Funny you should say that, but I get this strange electrical tingling sensation down my back and into my thighs when I put my chin to my chest”). The doublevision I put down to eye strain as I had other unexplained problems with my eyes a few years before (this particular jigsaw piece hadn’t dropped into it’s slot at this point).

The health and safety guy, barely into his twenties, was non-plussed. “Maybe ask your GP,” was his suggestion.

“Yeah… maybe I will”

I recounted my recent problems to my brother shortly afterwards at the football. “If you were a TV, I’d take you back to the shop” was his comment. I could see his logic, and I needed to see my GP about something minor anyway – I needed a wart removing from my lip – I could always mention this weird stuff at the end as an aside.

I saw a locum GP. It turned out that the wart was the least of his concerns. He did various tests. I had my reflexes tested, I watched his finger move left to right, I stood on one leg, I touched my nose then his moving finger then my nose and so on. He booked me in for an emergency CT scan at the hospital in the city. I should get an appointment within the fortnight, he said.

He thought everything I was experiencing was connected somehow, but wouldn’t be drawn on what it might be apart from that it could be something pressing on my spinal cord.

“Basically, where my expertise ends, someone else’s begins…” were his words, “take it easy… don’t do anything strenuous… no heavy lifting… look after yourself… be selfish… let others take the strain for a while.”

A GP has never said anything like this to me before. My previous visits had always been met with a “don’t worry about it, it’ll go away” air about them.

I thought of the heavy suitcase that I had to load and lift into the car, ready for our family holiday in a couple of day’s time. “I’m going on holiday at the weekend.” I explained.

“Where are you going?”

“Cornwall.”

“That’s good. They have hospitals down there.”

“You’ve got me worried now,” I laughed . . . no flicker of a smile on his face.

As I left the surgery, I felt the weirdest sensation. Something other-worldly, like I had been given a serious secret assignment.

I had a door with what could be a monster lurking behind it. All I had to do was find the key.

Uninvited MonSter

People talk about fighting MS, there’s even a Facebook group (of which I am admittedly a member) titled “Fight Multiple Sclerosis” but I don’t know if I can agree with that. I don’t think you can fight it, better to learn to live with it, accept it is happening and live your life regardless.

I often think that having MS is like having an uninvited monster (mine resembles Sweetums from the Muppet Show) living in your house, sitting on your chest as you lie in bed in the morning, following you to work, demanding a piggy back when you are walking up hill etc…

It’s impossible to get this monster to leave – it’s here to stay so better to try and house-train it. Tame it a bit. Tranquilise it with drugs. Learn some techniques to manage it – that sort of thing.