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 the last 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).
Showing posts with label oscillopsia. Show all posts
Showing posts with label oscillopsia. Show all posts
Thursday, 10 December 2009
Thursday, 18 June 2009
One year on ...
Today is the first anniversary of my diagnosis (see MS History - part two).
Health professional bodycount so far.
Starting with the first GP visit last year, the bodycount is as follows
Symptom recap:
Current symptoms:
Health professional bodycount so far.
Starting with the first GP visit last year, the bodycount is as follows
- GPs 4
- Practice Nurses 2
- MS nurse 1
- Ward nurse 1
- Occupational Health nurse 1
- Phlebotomists 6 (estimate)
- Physiotherapists 1
- Neurologists 5
- Neuro-psychologists 2
- Radiologists 4
Symptom recap:
Current symptoms:
- mild optic neuritis (since Jan '09)
- doublevision / nystagmus / intra-nuclear opthalmoplegia / oscillopsia
- fatigue
- tingling / pins and needles
- neuropathic pain in legs
Symtoms that have cleared up for now:
- L'Hermitte's sign
- vertigo
- muscle weakness
- involuntary muscle movement
Tuesday, 5 May 2009
a little bit further along that long road to fitness
Managed two miles tonight in my secret moorland training camp. Yay! target reached.
Contended with failing light, with mist/drizzle (mizzle?) and a sharp headwind on the flat and downhill sections, but luckily behind me for the uphill. Oh! and an undone shoelace for much of the second mile
I think the "bad" weather helped. I have never been a hot weather type, but the drizzle was ice cold and kept me cool all the way round, so none of the usual crap apart from a few jumpy visuals after - also right eye wouldn't look right for a while. I only had shorts and a T-shirt - no poncey jogging bottoms for me - no way!
Been a fairly busy day all round. Feeling good now - buzzing. Won't be able to sleep easily. Shame because it's one in the morning already.
Hopefully three miles next time.
Contended with failing light, with mist/drizzle (mizzle?) and a sharp headwind on the flat and downhill sections, but luckily behind me for the uphill. Oh! and an undone shoelace for much of the second mile
I think the "bad" weather helped. I have never been a hot weather type, but the drizzle was ice cold and kept me cool all the way round, so none of the usual crap apart from a few jumpy visuals after - also right eye wouldn't look right for a while. I only had shorts and a T-shirt - no poncey jogging bottoms for me - no way!
Been a fairly busy day all round. Feeling good now - buzzing. Won't be able to sleep easily. Shame because it's one in the morning already.
Hopefully three miles next time.
Saturday, 2 May 2009
The long road to fitness
I went for a run this evening out on the moors. There's a triangle of road that is exactly a mile round so it's easy to assess how (un)fit I am.
I hit the MS wall at one mile. Uhthoff not far behind - my eyes starting to play tricks. I just couldn't lift my feet at all.
Next time I go out, I will aim for two miles.
Two years ago, I was going out for two five mile runs every week, involving hill climbs, the lot. I also wondered why I couldn't see properly as I was running or why my leg was going numb in the shower afterwards.
I feel surprisingly un-fatigued now and it's quite late. Just sitting in my tingly cloud. Must try to go out again before my personal trainer comes on Thursday.
I hit the MS wall at one mile. Uhthoff not far behind - my eyes starting to play tricks. I just couldn't lift my feet at all.
Next time I go out, I will aim for two miles.
Two years ago, I was going out for two five mile runs every week, involving hill climbs, the lot. I also wondered why I couldn't see properly as I was running or why my leg was going numb in the shower afterwards.
I feel surprisingly un-fatigued now and it's quite late. Just sitting in my tingly cloud. Must try to go out again before my personal trainer comes on Thursday.
Wednesday, 17 December 2008
Life with MS - Part One - Symptoms
I don't want to come over all "woe is me" because there are plenty of people out there on the internet trying to out-do each other with their bad symptoms and there are many others with MS who have it much worse than I do (my old neighbour who also has MS, doesn't recognise me now when I see her).
I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.
Symptoms happening now:
Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it's toll too, in terms of fatigue and people thinking you are crazy.
Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won't keep still. It gets worse if I'm tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don't read as much these days.
Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.
Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously - a bit like running with a video camera.
Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry - I had a week where half my head had pins and needles.
Bladder problems (not sure since when)
I sometimes find it hard to go. I don't always fully empty my bladder - I simply can't - and I can need to go to the loo several times during the night giving me a disturbed night's sleep.
Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory - a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of.... erm... ...anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.
Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can't keep still and I can't relax. This happens almost daily and can start as early as mid-day.
Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.
Other symptoms:
Stiffness / Muscle spasm (Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days - stiff as a board. I found it very difficult to move. It coincided with having hives - I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 - in a relaxed state they were moving and twitching all over the place.
Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.
Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it's a dead cert.
L'hermitte's sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.
Vertigo (2004 to 2008)
An intermittent symptom - it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it's worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It's very unpleasant - I would rather have doublevision over this any day.
Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.
So there you go. Quite a wide range of stuff, sensory and visual mainly.
I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.
I thought for the purposes of this blog that it might be useful to document some of the symptoms I have experienced both now and in the past to give readers some idea of what it is like to have MS. Please note: this list does not include the marvellous array of drug side-effects. More on those later.
Symptoms happening now:
Doublevision (since March 2008)
when I look left I see two of everything side by side. Simple as that. The more I look left, the bigger the displacement between images. Makes crossing the road and recognising people in the street difficult. Constantly closing one eye takes it's toll too, in terms of fatigue and people thinking you are crazy.
Nystagmus (since summer 2008)
When I look right, I get nystagmus. My eyes flicker and won't keep still. It gets worse if I'm tired or have done some exercise and I can sometimes get jumpy eyes looking straight ahead. It makes reading and watching telly very tiring and I don't read as much these days.
Intranuclear Opthalmoplegia (since March 2008)
Looking left to right or right to left my eyes travel at slightly different speeds so it takes time for the two images to match up when looking right. Things can look a bit trippy when glancing round all over the place.
Oscillopsia (since 2007 or earlier)
my vision jumps around all over the place if I am running or walking strenuously - a bit like running with a video camera.
Pins and needles (intermittent until March 2008 and constant since then)
I get tingling sensations in my fingertips constantly. Sometimes it subsides to a faint tingle. Once or twice I have had a window of half an hour or so when they have disappeared completely (the drugs working). Mostly I get the electric tingling sensation in my fingers only, but it can spread to my hands and even my forearms. I also get these sensations in my feet, particularly my right foot. My right leg feels fuzzy for most of the time and walking can be troublesome on a bad day. I have numb patches on my right foot. This all gets worse if hot or tired. Also according to a 2004 diary entry - I had a week where half my head had pins and needles.
Bladder problems (not sure since when)
I sometimes find it hard to go. I don't always fully empty my bladder - I simply can't - and I can need to go to the loo several times during the night giving me a disturbed night's sleep.
Cognitive Problems (not sure since when)
I have difficulty with concentration and short term memory - a particular problem with routine tasks, such as making payments to the child-minder, credit cards etc. My mind can wander in the middle of conversations as well and I lose the thread of.... erm... ...anyway I have an old pre-diagnosis diary entry where I thought my memory and concentration had improved since taking Omega 3 tablets, but I was probably documenting a remission period.
Pain (not sure since when)
Apart from the pins and needles, I get sharp shooting pains from my finger tips occasionally. The worst pain I get is a weird cramping sensation in my legs which feels like insects (ants in my imagination) moving around under the skin. This is unbelievably uncomfortable and when it happens I can't keep still and I can't relax. This happens almost daily and can start as early as mid-day.
Fatigue (since March 2008, but also during hot days in 2007)
Like someone has taken my battery out. I had this at work once and found my mind blank as if I was sleeping with my eyes open. It happens intermittently and when it does I might as well be made of concrete. I will just want to sleeeep.
Other symptoms:
Stiffness / Muscle spasm (Spring 2008)
I had a problem with this in the spring of 2008. I was an old man for three days - stiff as a board. I found it very difficult to move. It coincided with having hives - I think I had an allergy to some washing powder which brought this on. I also had involuntary movement of my calf muscles in March 2008 - in a relaxed state they were moving and twitching all over the place.
Optic neuritis (March/April 2004)
Flickering lights in my vision. Some pain in my eyes when looking round. Flashes of milky white light in my vision when looking round in the dark.
Headaches (July 2004)
I reported in my diary of the time that I had a headache that had lasted for four weeks. Of course, I could have had any number of MS induced headaches, but when one lasts for four weeks, it's a dead cert.
L'hermitte's sign (March 2008 to Autumn 2008)
Placing my chin on my chest created an electric shock sensation travelling down my back and into my thighs, or, on a good day, like someone pulling a tickly, twiggy branch up my back. I think drug therapy may have cleared this one up for now.
Vertigo (2004 to 2008)
An intermittent symptom - it comes and goes. I felt a mild wave of giddiness the other day when I was bending down for something, but at it's worst vertigo can make the whole world spin and induce a feeling of seasickness. Even turning over in bed can make me lose my balance completely and I have to sit up to regain my bearings. In 2004 and 2007, this was one of the major symptoms I had to deal with and I spent a night of hell intermittently spinning and vomiting in 2007. I also used to walk into the walls along the long corridors at work. It's very unpleasant - I would rather have doublevision over this any day.
Ultra-sensitivity (pre-2007 to 2008)
I have patches of skin that can be ultra-sensitive and uncomfortably ticklish.
So there you go. Quite a wide range of stuff, sensory and visual mainly.
I guess since diagnosis I am more aware of everything that is going on, so I may have missed out a whole heap of weirdness that has come and gone over the last few years. Now I am on beta interferon, the length of time between relapses should lengthen, but I should be able to recognise when one starts when new symptoms start appearing or old ones start re-appearing and I will document it here.
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