Eye and blood appointments

I went to see the opthalmologist and orthoptist last month as a follow up to my December 2009 appointment. It took 65 minutes of waiting in a waiting room  before I was eventually seen.

Everything is fine with my eyes – pressure, field test, colour vision, optic nerve are all OK. Yes, I have had optic neuritis in the past but it has healed to such an extent that the opthalmologist said she couldn’t have told I’d had it, prior to me mentioning it.

“I have never known any MS patient go blind from optic neuritis …Not permanently …Not yet” were the opthalmologist’s words of comfort.

Apparently my pupils are sluggish to react to light or it’s absence, but are sluggish at the same rate, so I don’t notice.

I’m also assuming my blood is OK after not hearing anything about the routine blood test I had last month.

I guess the next medical appointment I have to look forward to is a trip to the big city in June to see my neurologist.

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“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).

Doublevision

Wahay! I am off to see an orthoptist tomorrow to talk doublevision.

Doublevision and eye movement problems in general have been my one constant since I had my last major relapse in 2008. My MS history is littered with symptoms and side effects that have come and gone or have fluctuated with other external factors such as stress, medication, temperature, exercise or pure  bad luck. Doublevision has remained constant since the spring of 2008.

Just like the MS in general, it is a companion but not a friend. It is the doublevision that reminds me I have MS when the other symptoms are lying low for a bit. I also think I have the doublevision to thank for the diagnosis – if I didn’t have it in the first place, I may not have made the fateful GP appointment. I would have probably lived with the tingling fingers, the fatigue, the occasional vertigo, even the pain for a bit longer before seeking medical advice.

Doublevision affects me only when I look left. From a single image looking straight ahead, two side-by-side images appear the instant I start looking left and the displacement increases the further I go. When I first discovered I had it, I tested it every breakfast-time by gradually looking left at two chimneys on the next street. These chimneys would eventually match up becoming one chimney with two TV aerials. It never got any worse, it never got any better. One and a half years on, it is still the same.

People ask me how I manage to drive with it. The answer is, I close one eye when looking left. Simple as that.

I find that I am constantly screwing up one eye in everyday situations, though, or I would have difficulty recognising people in the distance, crossing the road, participating in meetings and so on.

When I go out for a drink (I honestly don’t drink very much), I makes me feel drunk/ill way before I should do.

It doesn’t normally bother me. It’s constancy means I have learned to live with it. But it does tire me out and this has an impact on my mood and fatigue levels.

There are two possible solutions. One is to wear an eye patch. The other one is to wear glasses with prism lenses. I have no idea what these spectacles look like, so I have the fear of becoming the kid with the sticking plaster holding together a pair of national health specs. But then again I don’t fancy becoming Long John Silver either, therefore I have the orthoptist appointment tomorrow. It has been a long time coming and should hopefully have a positive impact on my quality of life.

A further appointment with an opthalmologist is scheduled for later this month.