"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 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).

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.

Yearly neurologist meeting - 2009

Yesterday, I saw my neurologist's registrar - Dr Somebodyorother plus one student.

I had to recap my entire MS history from Day 1 again. I always find it difficult to remember the relapses prior to diagnosis as I didn't recognise them for what they were at the time.

I did my usual set of tests. I had my reflexes tested, walk/limped from one line of old red tape stuck on the floor to another one and back while he timed me on his iphone, I walked an imaginary tightrope heel to toe, I read the eye chart, I resisted the pulling and pushing of my arms and legs, I had my eyes examined and I watched his finger move from left to right...

...my eyes were flickering...

"Do you want to come and have a look at this?" as he singled out my nystagmus to his student.

...and back again as his finger became two fingers as if he was making bunny ears behind an invisible head.

Back in the consultation room, my regular uber-neurologist breezed in with a student in tow. He flashed me a grin and told me how well I looked (see pet peeves part one) and leant against a bank of xray lightboxes with chin in hand as the registrar recounted his findings. At the mention of nystagmus, he lurched himself upright and held his biro vertically in front of my nose. I dutifully followed the pen, demonstrating my wonky eyes to the second student.

Excuse me while I digress - I have no idea if my nystagmus is a particularly textbook example or whether nystagmus cases are hard to find, but it is always singled out to the accompanying student. So if you are reading this blog and you are a neurology student (or otherwise), it will be quite easy for me to post a film of my oscillating eyes on this blog. If you would like me to do so leave a message in the comments and I will be happy to oblige.

He also noted my intranuclear opthalmoplegia, which his registrar had missed (my left eye moves a bit slower than my right).

Anyway, summarising the meeting:

• I have only had one minor relapse in the last year, so the medication (Rebif) is working and I can continue with it.
• An appointment is to be made at my local hospital, so they can try me with prismatic lensed spectacles that may correct my doublevision (no obligation to take them).
• I have regained my balance. Good old self-healing magical brain. Standing up straight with my eyes closed, I don't keel over and I can walk heel-to-toe across a room neither of which I could do a year ago.
• I need an extra blood test to see how my system is coping with the Beta Interferon

"You're doing very well" grinned my neurologist (cheerfully disregarding my mentioning pain and fatigue) before fielding a couple of my questions, shaking my hand and breezing out again.

So there you have it.

All being well, I won't see him for another year.

Neuro appointment

Off to the big city to see my neurologist tomorrow.

This will be my first annual check-up, so I am not sure what it will entail. My guess is that it will involve the usual tests to see if there has been any change since the last time I saw him plus a discussion about the medications I am taking.

I have been a bit flaky this week, with the heat - I had a bad spell of vertigo while playing with my youngest the other afternoon and I have had background dizziness since. On top of that, a few weird sensations across my body and the fatigue cranked up a few notches.

So I should appear nice and rough for him tomorrow.

My MS History - Part Five

For the story so far, see Parts One, Two, Three and Four

Between visiting Dr G and Dr Sh, I needed to do my research and also go for a lumbar puncture. I reacted badly to the steroids and as far as I can tell, they didn't do me any good.

After diagnosis, you enter a whole new world. Support networks are everywhere. The MS Society and the MS Trust sent me reams of free information to get my head round. I joined the MS Society and spent an hour talking to the local rep over the phone. The web is awash with discussion forums. I was assigned an MS nurse - H - who was to become my contact with the hospital as well as a source of advice and information. She came to visit me at home. I also had a meeting with one of the Occupational Health Nurses at work and the Disabled Workers' Group in my workplace also corresponded with useful and supportive advice.

With the information at my fingertips I was able to piece together incidents from my past and build up a picture of my MS history. The most interesting find was a diary entry from mid-2004 that documented "everything that has gone wrong with my health since starting work at (my employer)" This modest list was as follows:

• vertigo. My local practice nurse told me this was some sort of postural hypotension because it occured when bending or lying in certain positions. I had a mental image of my aorta being squeezed, every time it flared up.
• eye problems. I had flashes and flickering lights in my vision and pain when looking round. I went to my GP, an optician and eventually my local hospital as an out-patient over this and was told that I had symptoms consistent with a detached retina, but apart from that , they were stumped. I can picture the present-day Dave, in a white coat, leaning over the opthalmologist's shoulder: "Hmmmm.... how about optic neuritis??"
• a four week headache that wouldn't shift with painkillers
• pins and needles on one side of my head.

So there you had it. I had unwittingly documented my first major relapse.

Evidence of further MS activity crops up in other diaries. My 2007 diary, for instance, documented a nasty spell of vertigo and showed evidence of fatigue where end-of-the-day diary entries spouted random gibberish and spiralled off into unintelligible squiggles.

The lumbar puncture wasn't too bad. The nurse performing the procedure reminded me of someone I knew, so that put me at ease. The local anaesthetic being administered was the most painful bit. I felt the pop of the needle entering my spinal column and I was surprised to see that my cerebro-spinal fluid was completely colourless. Other than that I didn't feel any discomfort. Everything had been explained in great detail. I remarked that I had pulled a muscle round lumbar number 4, six years previously and the nurse commented that it was still rock hard and impossible to get the needle through. She did physio for one of Sheffield's top sports teams, so I guess she knew what she was talking about.

I was one of the 10% of puncturees who had bad headaches for the next few days and on the third day afterwards (my third day in my new job), I vomited.

Seeing Dr Sh was a world of difference from Dr G. He popped in to yet another session of symptom observation with students in tow, listened to his registrar (who amusingly became all flustered) and declared that I had obviously had active Relapsing Remitting MS, that I had probably had a few relapses that year already and that we should put me on some disease modifying drugs as soon as humanly possible.

I had one of those amusing moments like the good vibrations in the MRI. Dr Sh, his registrar (Dr T) and two students wanted to see how my eyes were moving, so while I followed the path of Dr Sh's pen, I was aware of four pairs of eyes leaning forward and concentrating closely on mine.

One of the marvellous things about a neurological diagnosis is that you get to see the MRI of your brain. It is an odd experience and, probably because I was in a vulnerable spot emotionally, quite moving seeing it nestling snug inside the thin skull wall, also... dare I say it as an agnostic... an almost spiritual experience.

part 6 >

Health Professional Body-count

With my long-awaited referral to a neuropsychologist finally coming through and my work leave sheet bursting with hospital and GP appointments, I thought it might be amusing to tot up the number of health professionals I have met regarding my MS since last summer.

• Phlebotomists - 5
• Neurologists - 4
• General Practitioners - 4
• Radiologists - 4
• Practice Nurses - 2
• Ward Nurses - 1
• MS Nurses - 1
• Physiotherapists - 1
• Neuropsychologists - 1
• Occupational Health Nurse - 1

So without including pharmacists, medical students, drug company staff, couriers, receptionists, admin staff, haematologists and other backroom staff - a grand total of 24 healthcare professionals have been involved in caring for my MS face-to-face to date.

My MS History - Part Four

For the story so far see My MS History... Part One, Part Two and Part Three

I had a job interview in two days time. With a rare evening free of brain fog, I was sitting at home preparing a presentation for it. My wife, unable to take the wait, had earlier phoned my neurologist, Dr G, to press him for the results of my MRI. As I was staring at the Powerpoint notes he phoned me back.

"I have the results of your MRI scan... It shows some inflammation in the white matter of your brain and spinal cord..."

Here comes the bit where they let you break the news to yourself:

"When you saw my colleague Dr S, did she give you any indication what it might be?"

"Yes, she said there was the possibility that it could be MS."

Quick as a flash: "Yes! It certainly looks that way."

"Oh! - OK!"

So there you had it. It was MS. Dr G - not an MS specialist by his own admission - thought it was nothing to worry unduly about. He told me that there were "only eight to ten large lesions" (only??) visible in the scan and more in the way of tiny insignificant ones. I now know that one lesion in a crucial spot can be more debilitating than several lesions spread all over the place.This, he thought, looked like a case of benign MS and that I would be very unlucky if I didn't go into remission and then get no further flare ups for years. Indeed some people can go for 20 years without a relapse, he told me.

He didn't think it worth me coming to see him at the appointed time the following week, but then conceded that I might have "some questions." So the appointment remained.

I took the rest of the evening off from job interview preparations.

The following day at work, I broke the news to my workmates.

I had no quandary telling them as I had good working relations with virtually everyone. I have since found that talking about MS can sometimes be the best therapy. It can be an invisible illness, so a bit of awareness raising doesn't go amiss, sometimes. I figured that it was probably better to be open about any problems I might be having in case I had a bad day, like the day where I had all but fallen asleep at my desk.

Everyone was very understanding and asked intelligent questions. All except my boss who pronounced that she knew someone with MS and that even when he lost the ability to walk it hadn't changed his life much because (to the whole office, rather than me) "they got him a little buggy!"

I made a mental note that should I get a little buggy of my own, she would top a hit list of people I wanted to hunt down and run over.

I met Dr G a week later. I won't go into the details of the meeting, except to say that he was uninterested and unengaged. The information he gave me was wrong. Things that I suggested were symptomatic of MS, like my optic neuritis four years previously, he disagreed with. He sent me and my GP a strange letter where he obviously hadn't listened to a word I had said and pronounced that my symptoms were getting better and clearing up, which was new to me. It all left me feeling very angry and very frustrated, on top of feeling crap anyway.

Dr G did three things for me: he prescribed steroids to relieve the symptoms (see Life with MS - part two(?)), he referred me to an MS specialist - Dr Sh - and most importantly, he made me determined to do my research, become an expert in my own MS and to build up a history so that I could make my case for treatment.

The criteria for getting disease modifying drugs in the UK is that you need to have two relapses within two years before they will prescribe anything. All the research says that the earlier you can get on the drugs, the better the long-term outlook.

part 5 >

Relapse spotting

Well, I guess this goes to show how difficult it can be to spot a relapse, sometimes.

I spoke to H (my nurse) today about the optic neuritis and heavy legs that I have been experiencing over the last few days. She thought the optic neuritis sounded like I was experiencing a small relapse, but the heavy legs and the 'cactus gloves' I am wearing may be related to coming off Gabapentin.

I am to "take it easy and see how I get on"

I thought I would make a list of things that had flared up over the last month or so:

• optic neuritis - lights in my vision (currently) and pain when moving my eyes (last Friday to Sunday)
• stiff heavy legs - currently finding it difficult to walk (up hills especially)
• foot switching itself on and off repeatedly - hot then normal then hot etc. (before Christmas)
• the same foot going excessively cold
• occasional tinnitus - right ear (since early December)
• dizziness - no vertigo head rush, yet, but I lost my balance a couple of times today and either bumped into things or nearly fell over
• my head has gone tingly a couple of times
• I felt very lethargic on a number of occasions since the New Year, but nothing I would class as chronic fatigue
• an increase in the amount of insects who seem to want to escape from my feet

I can go to hospital to be checked over and prescribed more steroids if I need them. I don't really want to do that, though. H also advised that I take some time off if I feel any more crap than I do now, and I don't really see that happening either.

Strangely, as I typed this, I experienced a tightness across my chest that may or may not be the "MS hug."

My MS History - Part Three

For the story so far see My MS History - Part One and Part Two

I was now on the books of a consultant neurologist - Dr G.

After re-capping my symptoms with one of his grim-faced registrars - Dr S - I spent 45 minutes undergoing the usual tests. I did my trick of not being able to walk heel to toe with my eyes closed, I watched a pen travel in front of my face from left to right and back again, I had the soles of my feet tickled, and the tops pricked with a pin, my reflexes were tapped with a hammer, I had to read an eye chart, walk a distance in a straight line, remember a phrase, say what day of the week it was, resist having my arms lifted and pushed against... all sorts of tests to ascertain what was wrong with me and how serious it was.

Only when I returned to Dr S's office, did I voice my fears.

I was fixed with a stern look: "It's not a brain tumour. Don't worry."

Instant relief... Phew!

Apparently there were a number of reflections on the CT Scan which might, just might possibly be inflammation caused by MS... Maybe... and if it was MS, which it might not be, to remember that a lot of people with MS lead long fulfilling blah.. blah.. blah..

MS!

Is that all!

I can deal with MS!

Hang on though, who do I know with MS?...

"Ermm... my old neighbour had MS, and she was a bit crazy, like talking to a little girl. No short term memory at all. Kept repeating herself..."

"blah blah... advances in treatment... every case is different... blah blah..."

It's not a tumour then - I can deal with MS.

The upshot of the meeting was that further tests needed to be done before anything could be confirmed, starting with an MRI scan.

A couple of weeks later, I found myself in the MRI suite of the hospital, with all metallic objects removed and a new pair of Primark trakkie bottoms on (with the metal eyelets cut out of them) that I haven't worn since. It being Sheffield, a number of pieces of paper were blu-tacked to the wall warning ex-steel workers of the damage that might be done to them with a large electro-magnet and the accumulation of metallic dust in their systems.

The very amiable MRI bloke asked me if I wanted some music while being scanned: "Rolling Stones or Beach Boys?"

"Er, Beach Boys please."

So there I was awaiting polarisation with headphones some padding and a metal cage wrapping my head so close it made contact with my nose.

"OK - this first scan will take two minutes, don't worry about the noise, if you are uncomfortable or anxious at all press the buzzer"

Noise?

>>Poc Poc Poc... ZZZUM! ZZZUM! ZZZUM! ZZZUM! ZZZHING! ZZZHING! ZZZHING! ZZZHING! VAMM! VAMM! VAMM! VAMM! ...good vibrations... she's giving me excitations... GRRANG! GRRANG! GRRANG! ZZING! ZZING! ZZING! CLUNNG! CLUNNG! CLUNNG! CLUNNG!<<

Lying perfectly still, afraid to swallow in case it mucked up the scans, I spent an hour in a noisy white tube, a little claustrophobic, but OK because I could press a buzzer and I could occasionally exchange comments with the radiologist. All this, while the intricate inner workings of my head revealed themselves on a computer screen just beyond the window of the adjacent room.

part 4 >

My MS History - Part Two

See Part One for the story so far

It was a brain tumour - it had to be. How else could it be explained? The GP said no heavy lifting, so maybe there was an outside chance of it being an enlarged blood vessel, ready to haemorrhage at any second.

Everyone has something they are frightened of. Something so unimaginably horrific they never want to confront the possibility of it ever happening. For me, it has always been either the unlikely scenario of being trapped in an enclosed space deep underground, or an inoperable brain tumour, growing insidiously and without mercy deep within the white matter. I had lost my mother to cancer just two years previously, so I was well aware of how quickly it could escalate.

OK, so tumour or blood vessel.... something to think about as I lugged the heavy suitcases and baby paraphenalia into the car for our Cornish holiday. People were being positive, telling me it might be a trapped nerve, but how could it be a trapped nerve if it was affecting both my eyesight and my hands and feet? What if the vertigo I had over the last few years was something to do with it, as well?

I had a look in the Family Health Encyclopedia... Hmmm... Brain... Disorders of the brain... Brain tumour...

Possible symptoms...
Headaches - I had a headache yesterday, so check!...
Doublevision - Check!...
Sensory impairment - Check!...
Balance problems - Check!...
Memory problems - yeah, I've been a bit forgetful lately, so check!

Let's cut to the chase...

Life expectancy, six months!...

Shit!

I asked my wife to make sure that she took plenty of photographs of me and the kids over the coming week. She rightly replied with the advice to get a grip and until we knew what it was it could be anything.

As an eternal optimist, I wasn't completely convinced that this was my last ever holiday with my family, but the possibility did weigh heavily on my mind. Despite this, it didn't ruin the week. Every morning I checked to see if the doublevision was still there and it was. I pressed my fingers together to see if they felt pins and needly still and they did. I watched my calf muscles roll around and twitch under their own steam. But the fact I had other stuff to think about and plan for and had places to go occupied my mind somewhat.

When I came home and found a letter from the hospital, booking me in for a CT Scan the previous week, everything came crashing back. A sleepless night followed and continuing the line of reasoning that I needed to keep busy to stave everything off - I headed to work.

A colleague asked if I'd had a good holiday.

I burst into tears.

On the end of the phone, the hospital asked if I could come in for the scan that very morning. When the NHS moves fast, you know it's serious. I made the 20 mile trip from work, getting changed and picking up my wife on the way.

Up in the CT Scanner ("Like sticking your head in a washing machine") I screwed up my eyes, trying not to think about the rays entering my skull and unlocking the horrors within. I also avoided the picture of cherry blossom on the ceiling of the scan room, strategically placed to calm the nerves.

Afterwards, I phoned my regular GP - Dr N - and he took the time to reassure me that it could indeed be anything, not just the worst-case scenario, and I could have something to help me sleep if I needed it.

This was the Monday, I had a follow up appointment on the Friday. In the meantime, I told myself that they would rush me in sooner if it was life threatening and that no news was good news...

part 3 >