Hindsight

My first big relapse was in 2004 with a numb face, a headache that wouldn’t shift, optic neuritis and vertigo.

It’s strange to think of it now, but the medical profession couldn’t explain the cause at the time. Probably because I presented the symptoms individually, rather than all in one go.

I then experienced a few more symptoms in the following few years that tied in with the diagnosis of my MS in 2008. This was when I had the mother of all relapses that left me with the doublevision I have today.

Because of the missed diagnosis, I’ve often wondered when the start of my MS really was. Until recently I believed it was 2004.

Now I’m not so sure I can put a date on it.

In the late eighties, for instance, I had some very dodgy visual symptoms that tie in with optic neuritis and Uhthoff’s phenomena as they followed midsummer cross country runs.

Then I remember there’s a bit of a gap between 1987 and 2004. Seventeen years with no symptoms at all…

…but last night I found some evidence to the contrary.

If you ask my wife, she’ll verify that I’m a bit of a hoarder (I prefer the term self-archivist). I was sorting through some old papers in my loft last night. Among them were some old pay slips, timesheets and sickness forms from when I lived in London. It was in the sickness forms that I discovered a referral to my then occupational health department in 1998.

The reason? Doublevision!

This, of course, is the very symptom that returned ten years later to make me seek serious medical advice.

Not just doublevision though, eye pain too, which sounds like a dash of optic neuritis thrown in to me.

I only have vague memories of all this, as this happened fifteen years ago. I seem to remember a workplace assessment giving the reason as eye strain, which explains why I didn’t pursue the 2004 wierdness when that’s how it was explained to me again.

It does lend some creedence to the idea that my MS is a lot older than I, or my doctors realise. It effectively expands the timeline by six years.

My mission, now, is to find further evidence. To see if I can fill in the gaps between 1987 and 1998. I kept a diary on and off in the late eighties and early nineties, and I have a box of old letters, so I’ll be interested to see if that brings anything to light.

I have a few unexplained medical issues that are still a bit vague in my memory from that time, so I suspect it might provide a few enlightnening memories.

It won’t change anything, of course. It won’t change my current situation and it won’t inform my treatment. One thing it will do though, is satisfy my curiosity.

It will have contributed largely to the person I am today.

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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.

DVLA update #3

If you are a regular reader of this blog, you will be aware that my driving licence officially ran out at the end of March as I have to have it updated every three years.

You will also be aware that I don’t have my shiny new licence yet due to the DVLA Medical Group making an admin error. An error that they have since apologised for. I likened them to an office of chimps a day or two before the apology, for which I am also truly sorry.

A day or two after the apology I received another letter from them advising me that they were contacting my neurologist and that this should sort everything out, but that it could take up to six weeks. That was back at the beginning of April.

It’s now six weeks later…

I have received another letter from the DVLA Medical Group stating “the information you have given us tells us that you have double vision (sic) so therefore we require you to complete a further questionnaire which is enclosed.” They go on to note “this questionnaire may appear similar to the one you have recently completed,” one? Try three, “but will provide us with important information from you that we currently do not have.” They then go on to tell me that I have 21 days to fill in the form, or else.

Actually, they do have all the extra info, because it is identical to the info I gave them three years ago. I wonder if the original form could ask if there has been any change in my medical circumstance since 2009, or maybe the original form could be reworked to be more comprehensive in terms of do you have eye problems, if not, go to question 6.

Or maybe… MAYBE… shock! horror! they could provide a secure online form that I could fill in from the comfort of my settee. They seem to be fine with me filling out my tax disc renewals online, why not my medical info? Then it wouldn’t matter how long the form is, I could tick a box to say a certain section isn’t relevant and be redirected to the next section.

Yes, it certainly could be a lengthy form, but it wouldn’t get lost and I wouldn’t have to fill it in four times, and it would presumably get processed a lot quicker.

Then comes the uncertainty. They want to know how I control my doublevision when driving. It’s a fair question and one I get asked by almost everyone when they find out about it. The stock questions and tickboxes they provide are: patch, glasses/lenses, prism or other.

I fall into the “other” category. I can’t help but feel that if I tick the “patch” box I’ll be off the hook, home and dry, scott free. The truth of the matter, however, is that my doublevision occurs when I look left so I don’t need a patch because most of the time I look straight ahead or to the right when I’m reading, and regular readers will know that I was refused lenses on the grounds that my eyesight was too good.

The way I control my doublevision is… wait for it…  

I turn my whole head to the left when I look left, or I close one eye. There. Simple …and probably a hundred times safer than wearing a patch as I have an all-round awareness of my environment that I wouldn’t have with a patch.

This solution seems to amaze most people as if it would never have occured to them.

Now I have another nervous wait to see if this info amazes the DVLA as well.

In the meantime, fingers, toes and eyes crossed…

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.

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.

“Sorry, there’s nothing we can do”

There is a stand up routine by Sean Lock where he recounts being told off for swearing by belligerent airport staff. His exasperated reply finishes with “This is exactly the sort of occasion swearing was f***ing invented for!”

Excuse me a moment…

a$%e!…  &u$%&!!…  (%d%*!!! %^&*!!…   f&*^:~!!…  ~*()&*&^$%$”!!!!!!

There – out of my system…

No, wait, hang on…

%&^*£$^%$!!

There. Feel a bit better, now.

I went to see an orthoptist about my doublevision, nystagmus, intranuclear opthalmoplegia and oscillopsia the other day.

I spent about an hour undergoing various tests. I followed a torch with my eyes. I had various lenses passed in front of each of my eyes and I had to say when the image became double and single. I pointed at dots with a long stick (and missed). I looked at various patterns to find the hidden 3D shape and of course I read the all too familiar eye chart.

Things I didn’t know before: I also have doublevision looking up to the right and my left eye doesn’t pull in towards the nose as much as it should do.

I have been looking forward to my doublevision being ‘sorted’ for a year and a half. As I mentioned in my last post, this is the one constant symptom, the one that doesn’t fade away and then come crashing back. The symptom that is constantly breathing down my shoulder reminding me I have MS and it is the symptom that spurred me on into visiting the GP in the first place.

It is also (as I screw up one eye to look at you) a symptom that makes me feel dizzy, tires me out, drags me down and makes me look like a weirdo. I was convinced that the magical people in the eye department of my local hospital would be able to build me prism lensed spectacles to straighten things out for me. Not to wear all the time, you understand, just when I’m at work, or in a meeting, or driving my car, or walking along the street. I’m not asking for much really. Just some semblance of normality.

“Sorry, there’s nothing we can do…”

Apparently, they can’t (or won’t) correct doublevision unless it occurs in the primary position (straight ahead). Also, my eyesight is pretty good – I can read most of the bottom line on the eye chart and if I did have glasses, they would have to be plain glass and the prism lens would blur things a bit for me.

So there I was watching the orthoptist as he moved his head left and right to demonstrate how you look left and right.

Yes, I should be grateful for the fact that I can see, and yes, I should be grateful for the fact that I can see pretty well and yes, it could be a whole lot worse – a hell of a lot worse. I could have been maimed in an accident, I know. But days like this remind me that MS is a complete an utter uncurable bastard. Things will never be the same. I will never be able to look around with my eyes travelling the same speed again. I will never be able to look left and see a single image. I will never be able to look right and keep my eyes perfectly still. I will never be able to read a book without it tiring me out. Things will never be how they used to be.

So when someone tells you there is nothing they can do, that little ember of hope at the back of the hearth that you thought might be coaxed back to life with some newspaper and a bit of careful blowing, is snuffed out with a gallon of water.

And what makes it all so much worse is that I will probably look back on this day and think how lucky I was back then compared to how I am ‘now’.

Doublevision is one of those symptoms that can come and go in Relapsing Remitting MS, but I’m pretty sure that after a year and a half we’re not just talking about demyelination on the nerve controlling eye movement. I think there’s been some permanent damage.

I have an appointment with an opthalmologist in a couple of weeks and they want to look at the back of my eyes and document the “state of things” I guess. They will probably also want to patronise me by telling me stuff I already know about nerve damage and so on.

So, having taken the knock and bottling up all the crestfallen feelings I’m back to the bustle of the hospital lobby. Past the people in Costa coffee. Skirting the guy with the mop and the couple with the walking frames. Through the automatic doors, past the A & E entrance, then the maternity wing with a handful of expectant mothers in dressing gowns, fags in hands.

Back to the car…

Negotiating the one-way system through the car parks…

Waiting for the ambulance to go past…

out onto the main road…

Whack the stereo on full blast to take my mind off things as I head back to town…

The music starts: “There’s no escaping from / the man it seems that I’ve become…” *

…The grief.

* test your music trivia – identify the track and you may or (more likely) may not win a prize (not decided yet, but nothing big and nothing amazing).