Magical Brain has moved

This blog has a shiny new home at http://davesmagicalbrain.wordpress.com/

Hope to see you there!

One year old today!

Hello!

Dave's Magical Brain (the blog, not the brain) is one year old today!

To celebrate the occasion, I would like to announce the *new* Magical Brain (again, the blog not the brain).

I am now to be found at the following URL:  http://davesmagicalbrain.wordpress.com/

The new blog has all the old posts and comments plus a few extra features.

I hope to see you there!

"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.

Unlike father unlike son

My Mum used to say that my Dad (a former cross-country runner) would often wake her up in the middle of the night by running in his sleep. His legs and feet going like the clappers. When woken and asked to explain he would mumble something about running across the fields and ditches of his native East Anglia.

I used to think that was quite sweet, and in the same way as my pet cat flying off to chase mice in the sky, I often hope that the afterlife for my Dad might include a few lengthy runs particularly as he isn't as mobile as he used to be.

I was woken up last night. Even though I have been taking my amitriptyline pills for neuropathic pain, my legs and feet decided to ignore them and they kept me awake for a long time in the early hours.

It's hard to describe how neuropathic pain feels, and it's different for different people. Sometimes they feel as if my legs are made of sponge and they are gradually being wrung out. Sometimes it feels as though they want to curl and shrivel up like a burning match. Sometimes it feels as though a large concrete slab is being placed on them imperceptably slowly by just a micron or two every minute or so.

Last night it felt like they just wanted to detach themselves and run away, running to catch up with my Dad on his ploughed field.

Birthday hangover

It was my birthday at the weekend and now I'm hungover.

I must have had a good time... Hmmmm... Yes, I guess I did...

Saturday started by taking my eldest to her dance class and back. I started my pottery tuition in the afternoon and on Saturday evening, I ventured into Sheffield to see Reverend and the Makers play a storming hometown gig.

Sunday was my actual birthday, so I managed a little bit of a lie-in before bombardment by breakfast-in-bed wielding daughters. This was followed by a long trip to the supermarket. Then, picking up their Grandad en route, we visited one of the local parks' play areas where we had a go on the resident miniature train.

This was followed by a slap-up meal in a local eaterie, including an ice-cream dessert with a candle on top before a round-trip to show the girls Matlock illuminations.

Monday involved a day off work to do some much needed gardening, followed by helping my daughters decorate my birthday cake. By the evening, I was dropping off in my chair, so I had a brisk walk around the block to blow some life into me.

So, yes, a very enjoyable birthday... and now, even though I didn't drink a drop of alcohol, I have a hangover. A hangover caused by dragging a monster round with me all weekend. My head feels fuzzy, my hands and arms are buzzing, my legs feel like lead. I can't stop yawning after midday and I know I am going to struggle to keep awake after the girls' bed-times tonight.
I often hear people of "a certain age" claiming that "you're only as old as you feel," before twirling their umbrellas and tappity-tapping out a dance routine. If that's the case, I guess I have just reached 98, not 38.


STOP-PRESS: as I was typing this I recieved a phonecall from my local Occupational Therapist to say that I had been referred to her fatigue clinic. My first appointment is next week. The OT sounded very dour, like the last thing she wanted to do was see me, so I will keep you posted.

Experience of fatigue

Up to eighty-seven per cent of people with MS, including myself, experience fatigue at some point. It is important to us that people don’t think fatigue is the same as tiredness. It is the most draining experience imaginable and it can happen for no apparent reason.

I went to a talk by an occupational therapist the other night on fatigue and it’s management. As part of his presentation, he included quotes from some of the people with MS he has consulted with over the years.

I thought it would be useful to re-quote them here as I am sure these statements will resonate with the fatigued among us and go some way to help explain what it is like for others:

“Fatigue can literally reduce me to tears, for no reason, I just find I’m crying – it’s like the plug has been pulled out and my energy, almost my life feels like it is going down the drain…”

“I feel like I’m in a jail cell as I’m so tired all the time…”

“It feels as though my legs are full of lead, it’s literally like wading through treacle trying to do things…”

“It hits me like a wall and then I can’t do anything… There’s no real warning to it happening. Sometimes I’m not even sure if I’m awake.” (Oh boy, yes!)

“It’s hard to describe to someone that you’re feeling fatigued and tired when you’ve not actually done anything. I used to be so active.”

Prior to my diagnosis, when I was going through the darkest hours of a relapse, I had a number of afternoons at work where I had what can be best described as a waking sleep at my desk. It was deeply worrying to say the least and I remember the thought “What’s happening to me?” playing on a loop in my head.

Perhaps the hardest thing about fatigue is that it is invisible to everyone else. I’m not being lazy or unhelpful and I can still do everything I could do before, it is just that sometimes I can find everyday tasks exhausting.

Further information

• Fatigue factsheet (MS Trust)
• Living with fatigue (MS Trust)
• MS Essentials: Fatigue (MS Society)

By way of introduction...

Hi

for anyone that may be discovering this blog for the first time, I was diagnosed with Relapsing Remitting MS in June 2008 and started my magical brain as a means to keep in step with things and let friends and acquaintances know how I'm getting on (cactus hands today, folks).

Anyway, if you don't know where to start, why not read my MS History?

• Part One 
• Part Two 
• Part Three 
• Part Four 
• Part Five
• Part Six
• 2009 update

Thanks to the MS Trust, by the way, for linking to me from their Facebook page. Reespec back atcha!

MS Explained

Just a note to say that the MS Trust (UK) have updated their marvellous booklet MS Explained.

This is a little bit more involved than some of the literature out there. While not for everyone, it explains the neurology and immunology aspects of MS very well in layman's terms. I would heartily recommend this publication to the newly diagnosed. In the last year and a bit, I have read up on MS from various sources, gorging on the information within. I am pleased to report that the MS Trust publication had a lot to teach me. I know which parts of the brain have been affected causing my diplopia and nystagmus, for instance.

If it's a more general leaflet for friends and colleagues you're after I would recommend the MS Society's "What is MS?"

If you live in the UK, the MS Trust can send you a copy of MS Explained for nothing. You can also download it for free wherever you are (along with numerous other publications), just click on the link below.

• MS Explained

As if by magic, a support network appeared

Two items of fantastic news here in North Derbyshire. Firstly, our wonderful MS nurse has teamed up with the local MS Society branch to organise a series of weekly talks/discussions/lectures titled "Getting to grips with MS" for the newly diagnosed. Topics are to include exercise, benefits, developments in treatments, coming to terms with the diagnosis, fatigue management, employment issues amongst others.

A lot of ground that these talks cover, will be stuff that isn't relevant to me, things I already know or things I think I already know. I think the main benefit for me, will be the chance to meet people in a similar situation, share experiences and feel a little less isolated.

In another new development, my local branch of the MS Society is organising a series of monthly drop-in sessions at a local surgery for people with MS or their partners/carers to have any queries answered, access MS Society literature or simply to network with others over a cuppa.

I don't normally interact with my local MS Society as the people who attend the social evenings tend (this might be a little unfair) to be in an older age bracket. This is an issue that the MS Society has recognised nationally, judging by the voting slips that were sent round recently. I guess the EMYAMS facebook group is one outlet seeking to redress this.

It would be interesting to see if other areas have similar schemes for reaching out to people, or if there are any innovative ideas out there.

ffffffaaaaaaaatiiiiiiiiiiiiguuuuuuueeeeeeeee...... er.. [ctrl-alt-del] Damn!.. Didn't work.

I have been reading a recent issue of ms matters (quarterly MS Society magazine). It had invited readers as part of MS Week, what they thought was the most common misconceptions around the disease - usual stuff - wheelchairs; appearing to look well etc.

One of the more common misconceptions centred around fatigue, how it is generally percieved as being a bit tired or even plain laziness.

The only way I can describe full-on MS fatigue is, imagine you are working on a computer and you want to install a new program or you are downloading several megabytes of information and you PC crashes. Everything freezes, the egg-timer doesn't look like it is ever going to be anything other than that indefinitely.

Having MS fatigue is just like that - a sudden brain-crash. Nothing works. I have been jolted 'awake' from such moments when I have realised that I have just spent a period of time (seconds? minutes?) where I have been thinking zilch, nada, nothing at all - a completely empty thought process. I just didn't seem to have the energy to think. While that's quite a scary thing to realise, it's even scarier to feel your mind sliding back into that position again only seconds later. It's like my brain has been determined to shut itself down, but without the luxury of a ctrl-alt-del.

Of course, that's the mental side of it. Physically, it's like being in a four-legged race with both legs strapped to sumo wrestlers.

Right - now I'm off on my holidays. Going to do battle with hot weather.

wheelchairs not sexy - shocker

Common complaint from people with disability is that adaptive devices - wheelchairs etc - aren't sexy. They are commonly black, grey, beige and depress the hell out of their users. Interesting letter to ms matters recently posed the question "What if James Dyson had a close relative who was disabled?"

Cool - imagine that - a wheelchair designed by Dyson!... visions of a large yellow ball swerving round corners.

Health talk online

Even with all the support in the world, diagnosis of a chronic illness can be a dreadfully lonely experience. While the MS Society and the MS Trust and the nurse assigned to me were all utterly wonderful when I was diagnosed, I think what I needed (need) more than anything was to connect with other people who have MS and share experience.

Ultimately, health professionals specialising in MS can give you the lowdown on the disease and tell you everything you need to know and more, but it is extremely unlikely they have the disease themselves. It is like a NASA engineer telling an astronaut what it will be like flying in space.

So it is only natural to turn to the web for advice. But it's also widely acknowledged that the web can be a wildly misleading and biased source of information (I did Health Informatics as part of my Masters degree, so trust me).

For the most part, I have connected with others so far, through YouTube, various Facebook discussion boards and blogs such as this one.

When I heard about www.healthtalkonline.org on the BBC1 Breakfast show this morning my ears pricked up. This is a new resource primarily for people diagnosed with chronic illness.

The idea behind it is that you can access interviews from other people with the same condition as you or your loved one and hear their experiences of diagnosis and living with the conditions. The patients interviewed are a representative sample from across the UK and the site is managed by experts from Oxford University.

"Sounds interesting," I thought "must remember to check it out later."

The BBC feature has obviously increased traffic to the site crashing it's servers as it was unavailable for much of this morning, but I have just accessed the site and I can report that there is NO information on MS. Clicking on "nerves and brain" brings up dementia, epilepsy, motor neurone disease, parkinson's disease and stroke, yet there is no information on the UK's most common neurological condition. Even clicking on "living with disability" only brings up
information on autism.

The only relevant info is on chronic pain where apparently one of the interviewees has MS.

I know, I know... early days... give it time...

...but it's very disappointing.

MS Trust open door

open door is the quarterly newsletter from the MS Trust. It largely reports on research results and the like, but despite this, is very readable. The current issue (just arrived) deals with posture, depression, misleading stem cell treatments and the impact of progressive MS on family life amongst other things.

Items that caught my eye:

Prevalence of MS in the UK may be as great as 100,000 people, not 85,000 as previously thought. The figure was arrived at after studying codes indicating an

MS diagnosis from GP records. Considering the fact that I consulted my GPs with vertigo and optic neuritis symptoms in the four years leading up to diagnosis, without mention of MS, this rings true.

Oral treatments for relapsing/remitting MS take a step closer with the National Institute for Clinical Excellence (NICE) announcing that fingolimod and cladribine will be included in their next round of appraisals. Both of these drugs have shown positive results in trials so far, but some safety issues need further research. I don't think I need to say that I would welcome disease modifying therapy in tablet form, do I? The thrice weekly ritual of warming up syringes and choosing injection sites is a real bind. I don't know what side-effects are associated with these drugs.

MS patients sweat markedly less than people without MS. I would guess that this isn't the case with all people with MS, just as not everyone has the same line-up of symptoms. Heat aggravates MS symptoms, so I also guess that a sweating impairment could begin a vicious circle of overheating.

If you are living in the UK, you can sign up to receive open door on the MS Trust website: www.mstrust.org.uk

pain

Currently experiencing a lot of neuropathic pain in my feet and legs. It can't be due to forgetting the tablets too often as I have remembered to take them the last few days.

I am going to continue to take them at the current level for this week and if no better, I'm upping the dose.

Walking about relieves it a little, but the pain always seems to catch up.

The eyes (will) have it

I have been waiting for two months for the letter deferring me to my local hospital eye dept. (I need glasses to correct my doublevision). I chased my neurologist up over the phone today.

My Uber-Neurologist's secretary apologised on behalf of the consultant (previously referred to as Dr Somebodyorother) who saw me, explaining that they had a reputation for being "a bit slow."

What a strange thing to admit...

...but actually quite a breath of fresh air.

My case notes are going to be passed onto my neurologist proper (Dr Sh) who should be requesting an appointment be made via my GP.

It all sounds very convoluted but at least things seem to be on the move.

Alcohol

It has been amended since, but I once laughed at a section in the MS Society publication "What is MS?" which described potential problems when drinking alcohol.*

The problems highlighted included balance, bladder control, slurred speech and double-vision.

"So how do I know when I'm getting drunk then?" I thought.

Last week I had a few pints of lager at a wedding reception. I see two objects when my eyes look left anyway, but I found it difficult to straighten my vision out coming back to centre.

I guess this contributed to my drunken state, because it made everything swim earlier than it was meant to. A most unpleasant sensation and one that made me feel a bit maudlin for a while.

The boundary between sober and drunk is now very ('scuse the pun..) blurred.

* The publication has since been amended to say that MS symptoms can become more acute when drunk.

How deep is remission?

Someone once said to me "MS is a companion, but not a friend."

These words ring true. I have been in remission for a while now, but I still haven't shaken most of the symptoms. The dizziness and fatigue have been pushed into the background but they grumble along, just to let me know they are still lurking away.

The tingling fingers and leg pain are still there as well, but there will be a gap of five minutes or so every now and then when my hands feel "normal", and the crushing and squeezing in my feet and calves won't start until later in the evening.

The double-vision is ever-present and consistent though, so it is this that I use, just to pinch myself that this is really happening to me. Let's just look left for a second, I tell myself... yes, two plant-pots instead of one.

Being told you have MS is so surreal that when symptoms are on a back burner and I feel good about myself, I feel the need for a reality check.

You may ask why. Why not just enjoy the moment? I think the answer is that if all my symptoms disappeared completely, I would forever be paranoid that there was a big attack just around the corner, waiting to take me by surprise. Checking that everything is still going wrong in it's usual way, ensures that I get some constancy and I have something that I have the illusion of keeping in check.

Then of course, there are the times when I forget to take my tablets for a few days and it feels like I'm holding a cactus anyway.

This weekend was a mad one: jobs to do, daughters to amuse etc. On top of all this the weather was warm and muggy and I came down with a head cold which screwed me up for long stretches of the day. There were a couple of times when I simply couldn't stand up. And as I type this, I am battling with drooping eyelids and a brain determined to shut itself down.

I guess there is no easy way to guage where remission begins and relapse ends as everything is there still - making it's presence felt. The terrorist cell that operates in my central nervous system is currently doing a woollens wash, with their balaclavas probably just starting the spin cycle.

The next move they make could be tomorrow or it could be in twenty years time.

Whenever it happens, I like to think that I will be ready psychologically.

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

• 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

If you consider the medication as well, I have probably cost the NHS more money over the last year than some of it's employees.

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

Of the current symptoms, the fatigue and optic neuritis aren't quite as acute as they were at first onset, so I feel much better, relatively, than I did last year. I think it is important to stress that I still have bad days, though (I nearly fell asleep in a meeting yesterday). Things are also helped by friendlier medication.

Synchronicity

I am enjoying some synchronicity with my car at the moment.

I have just had my first annual meeting with my neurologist, which was quite a positive affair.

My car has had it's first MOT - it passed.

I have been promised prism lenses to combat my double-vision.

My car has had the offside headlamp adjusted.

I have been feeling good this week - got a lot done, felt quite happy.

Car fairly zipped along the lanes on the way home in the late afternoon sun today, Sonic Youth blasting out of the stereo.

It has been a good week.

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.

Advantages of MS - part 1

Stubbed my toe this morning - the second toe on my left foot. I split it under the nail - blood everywhere.

This would normally have me hopping round the floor with tears in my eyes. Luckily it's a toe I can't feel - hooray!

World MS Day

weirdness

been quite stable for ages - just the come and go of pain and fatigue.

Today, I feel a bit weird.

It feels as if the side of my head is undulating and my right leg feels a bit weak - definitely something up, will monitor. May go away in a bit. Come to think of it - this morning my foot felt ice cold.

Hmmmm.....

Pet peeves - part one - the MS makeover

Imagine - you have woken up with instant jet lag. The world is spinning. Your fingers are feeling fuzzy as you fiddle with the buttons on your shirt. Your vision is playing tricks on you. You are moody. Your legs may as well be encased in concrete because you can barely lift them as you walk and you know... you just know... the odd creeping, squeezing sensation that starts in your calves will kick in later and that no painkiller will relieve it. You struggle along but to all intents and purposes look fine on the outside.

Then you start talking to someone you haven't seen in a while, a former colleague or a relative perhaps and they ask about your health and you respond with some vaguely optimistic small talk. Then as you are leaving they say....

(cue fanfare) "It's good to see you looking so well, anyway"

"Thanks."

This multiple sclerosis is doing wonders for my appearance. No-one ever complemented me on the way I looked before I was diagnosed and now I get complements left, right and centre. It must be doing something good as it eats away at my brain and spinal cord - it seems to have given me a makeover in the process.

My pet peeve is this: I have no problem with people telling me I look good, healthy or whatever. Bring it on! I can live with that. It's natural for people to want me to feel good and when they say it, it shows their heart is in the right place.

What gets me down is that I would like to say something along the lines of "Actually, I feel like death. I have good days and bad days but today is a BAD day. I live with the knowledge that this is only going to get worse over time and because it is an invisible disease I can't outwardly display the fact that I am ill, but yes, at least I don't have a cold which would indeed make me look poorly." But I can't. Of course I can't. People are being kind and they are concerned for my wellbeing. They are being friendly.

The last thing they want is some curmudgeon moaning about how crap they feel all the time, because it would frankly get on my nerves if I knew someone who felt the need to remind me at every turn.

It's just that sometimes you want to shout it from the rooftops...

...but then you remember rooftops involve some stairs

...and maybe some climbing

...and then you might have a giddy spell on the way up.

Sod's law.

The last thing I did online last night was post on this blog about how good I was feeling after my run. As I turned the computer off I felt slightly nauseous, decided I wasn't up to ironing my work shirt for the morning and stumbled off to bed. Between bathroom and bedroom I developed the most extreme chill. I spent the next hour or two shivering uncontrollably and my joints ached like crazy.

I had injected with Rebif about an hour before onset, so this must have been the side-effects. I have been injecting with Rebif for five months now and have only experienced mild reactions so far. Most of the material I have read states that side-effects are worse in the first three months before tailing off, but I guess this shows they can flare up at any time.

Feel like I could fall asleep at any moment.

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.

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.

One year on...

I finally made it to my local MS Group's social evening and AGM the other night. Great to meet people and compare notes.

Funny to be in a room full of people who, for the most part, look like they would rather be at home taking it easy.

Also funny to hold a conversation about concentration problems and really having to concentrate. I forgot the name of the person I was talking to and had to look it up later.

Found my usual inhibitions difficult to overcome. Someone asked me if I was "feeling wobbly" as I stood with a cup and saucer and I found myself breezily saying "No... er, yeah!" as the realisation dawned that the questioner was empathetic rather than making mockery. I have been wobbly all my life - always had a tremor, so I get all defensive when it is noticed.

Had an interesting chat about poetry and creative writing.

A couple of people remarked that I was brave attending (I turned up late, halfway through the Chair's address). I didn't particularly think so as I have always remained positive and have never been in denial. I am a bit shy socially, and I was one of the youngest there but was made to feel welcome. One person recognised me from work.

There was a first birthday cake for the branch. Coincidentally, today is the first anniversary of my initial GP visit. See my MS History - Part One.

A number of thoughts and ideas came to me as a result of attending the meeting. I will blog about these later.

MS Awareness week - Limboland haiku sequence

Hello all

It is Multiple Sclerosis (MS) Awareness Week across the globe. To mark this, I have written the following haiku sequence.

Regular readers will know that I was diagnosed with Relapsing Remitting MS in 2008. Limboland was inspired by the journey to diagnosis.

Limboland

no hint of a smile -
for once my doctor says
"take it easy"

on the scan room ceiling
cherry blossom -
the staff retreat behind glass

not crying yet ...
your chin dimples
as you talk

diagnosis
I salute the magpie
anyway

on the news a terror attack ...
my leg
numb again

from a packed lift
a man on crutches
follows me to clinic

new year's eve
the bowl slips from my fingers...
smashes

Just a note on the cherry blossom haiku. Diagnosis of MS requires an MRI scan, but to eliminate other possible ailments including brain tumours an initial CT Scan is performed. This was described to me as being like sticking your head in a giant washing machine and I reckon that's a pretty good description.

I don't know if there is anything similar in other hospitals but at the Royal Hallamshire in Sheffield they have a light box on the ceiling of the scan room with an image of cherry blossom on it. I presume this is to calm the nerves while your head is x-rayed. Cherry blossom is an image often used in haiku, it normally signifies spring which in turn can also imply beginnings.

Limboland is also appearing somewhere on the MS Society website http://www.mssociety.org.uk/ and on my personal haiku blog: http://distantlightning.blogspot.com/

http://www.mstrust.org.uk/msawareness/
http://www.mssociety.org.uk/get_involved/campaigning/ms_week_2009.html

Drug experiments

It's official, I have been told by my GP that I can experiment with drugs.

Well, actually, no. I have been given the go ahead to increase the dosage of the amitriptyline to try and weigh up the pros of pain relief and the cons of the drowsy side-effects.

The side-effects are something I have yet to experience, or if I have, they have become lost in my general background dopeyness.

The pros are that the pain I had been experiencing seems to have abated slightly - occuring later or only if I have had a strenuous day. Not a daily occurence like before. And if I forget to take my tablets for a day or two (like the night before last) I start to get a bit fuzzier round the edges, the shooting pain will start in my fingertips and the squeezing sensation will start in my calves.

Starting last night, I doubled the dosage.

The difficulty is - if it seems to work, is it the drugs doing the work, or is it the crazy unpredictable roller-coaster of MS giving me some time off before it turns on me with a snarl?

It is around this time of year that I have experienced my most debilitating relapses. Hopefully this year, the terrorist cell lurking in my body will notice the beta interferon in my system and decide it isn't worth the bother. This year, I will also be on the look-out, so I should be able to get some treatment when I need it.

Only 4 more days until MS week

MS Awareness

I finally remembered to ring my motor insurance company to tell them I have MS. It made no difference to my policy other than they made a note about my (Grrrr...) temporary license.

One curious fact about MS is that the further away from the equator you go, the higher the incidence of MS. Consequently Canada and Scandinavian countries have some of the highest incidences of MS in the world. Even in the UK, The prevalence of MS is higher in Scotland than in England. It is also higher in the north of Scotland than the south.

Anyway, I told the call centre operative, somewhere in India, that "I have multiple sclerosis."

"You have what, sorry?"

"MS."

"Oh!... OK, you have MS... please wait for a moment..." on hold for about a minute... "Hello? What is MS?"

"It is a chronic degenerative neurological disease."

"Oh, OK, please wait while I check..." on hold again... "OK, I have made a note on your record that you have a neurological disease."

It is World MS Awareness Week next week. I have started early.


PS - Hi to Herrad, Richie and SwissToni - thanks for the recent comments

Back update

Back very sore and hurts when pressing against something, like the back of a seat, but apart from that it's OK - no stiffness or anything. Daughter unhurt, which is the main thing. In fact the only time she cried was when I said I'd really hurt myself and when I lied that Daddy was OK, she stopped - bless 'er.

Currently sitting in a static caravan being battered by strong winds and rain. Looking forward to a day of sunshine (before Thursday's heavy rain forecast) and meeting friends in St Ives - one of my happy places. Last time I came to St Ives I didn't know what was up with me and was convinced I had a brain tumour. Nice to return in happier (!) times.

Promised ourselves fish and chips tomorrow after not queueing at Rick Stein's place in Padstow today. Three queues - one for the sit down chippy experience, one to place take away order and another to collect take away order. The chips looked very nice I have to say, so the craving only intensified.

Bowed but unbroken

I'm on a long anticipated holiday in Cornwall - one of my favourite parts of the world. Visited the Eden Project today but managed to slip on some wooden edged steps (April showers). As I was carrying my youngest daughter at the time I could only let myself fall and I cracked my spine so hard on the steps I couldn't move or feel my legs for a while afterwards. My whole rib cage ached. Daughter unscathed except for the shock.

A couple of passers by asked if I was OK and I managed to sit upright and regain feeling in their company. I now have a massive bruise across my back and expect to stiffen up overnight.

Half an hour after the fall, I was OK again and enjoying the day but there was a moment where I thought I had broken my back so if all I suffer is a bruise and stiffness, I'll count it as a blessing.

PS - limited internet access - can read but can't tweet etc.

Bleurrggghhh!

That's how I feel.

My better half is wrapped up in bed with a stomach bug, and after a day of feeling a bit bloated I am wondering if I might have the same thing.

I hope not.

Last time I had a stomach bug - a bad one - I spent a night of hell as the MS, particularly the vertigo kicked in. Every movement I made spun the world around a Dave centred axis forcing me to retch as the seasickness took control.

Irony of ironies tonight I was meant to go to my first local MS Society social evening. I have been looking forward to it for ages as well.

But I feel just too bleurrggghhh!

Mr Pharmacist....

....won't you help me out today, in your usual lovely way

Popped into the chemists today to see if the "NO ALCOHOL" warning on my amitriptyline tablets, really means NO ALCOHOL.

A twinkly-glassed, tank-topped, phar-therly figure appeared from the back room as if by magic and assured me it was OK on the dosage I am on - I might get a bit of a headache in the morning, that was all.

Marvellous. I am not a big drinker by any stretch of the imagination, but I can now resume my tour of Eastern European lagers from the Eastern European beer section of my local supermarket.

"Hey mr pharmacist, I’ll recommend you to my friends, They’ll be happy in the end..."
(with apologies to The Fall)

I'm in pain...

It's not pain as you would conventionally know it and it's really difficult to describe the sensation. My feet and lower legs feel like they want to shrivel up and shrink into themselves with occasional stabs of more conventional pain from my toes. I used to describe it as a crawling sensation, but that doesn't do it justice, it is more like my calves and feet are sponges that
someone is gradually wringing out.

I have had this a while, probably a couple of years and the pain is there all the time. It normally causes what I would term chronic discomfort. In the last seven days, however, it has been flaring up regularly into toe-curling proportions. It will gradually get worse for a few hours later in the day. It can start at lunchtime or in the evening and progresses to become really debilitating. The only thing that provides relief is if I get up and walk around and I often imagine that my legs want to break away and run off by themselves. I guess it also gets worse the hotter or more fatigued I get.

Conventional painkillers - ibuprofen, paracetamol etc - are no good. I'm not keen on taking any new drugs after the experience I had with Gabapentin, so I'm going to see my GP in the morning if there is anything I can do or take for any relief.

This was written while screwing my face into contortions. Apologies if it's rubbish.

My MS History - Part Six

For the story so far...

• Part One
• Part Two
• Part Three
• Part Four
• Part Five

After one more session of double-checking with Dr S where he had yet another student in tow - it seemed I was becoming a textbook example of nystagmus - it became apparent that the steroids really hadn't done their job. So to suppress my existing symptoms I was prescribed Gabapentin. As you can read elsewhere on this blog, gabapentin turned me into a zombie. Being a vegetarian and not at all into human flesh eating, I decided to ditch these drugs at Christmas 2008, for the good of my (and everyone else's) sanity.

Parallel to this, I had been given details of Disease Modifying Drugs (DMDs) prior to this meeting and using a slightly out-of-date MS Decisions website, made my choice which I was going to spend the foreseeable future taking...

... and then I made it again.

I had a choice of four DMDs, either Glatiramer Acetate (Copaxone) or one of the three Beta Interferon drugs - Rebif, Betaferon or Avonex. The choice was more of a case of elimination as none of the drugs stood out as being the obvious choice.

Copaxone was rejected because it was a daily injection and I didn't fancy the possibility of panic-attack style side-effects. It also hadn't got the clinical trial track record of the Beta Interferons.
Avonex was rejected because it was an intra-muscular injection and once a week. I wouldn't say that I was frightened of needles by any stretch of the imagination, but I didn't fancy dreading the one day every week where I would need to plunge a two inch needle into my leg muscle and then enduring any side effects over the weekend.

Betaferon was rejected because I felt that mixing the drugs every other day would become a bind. I downloaded videos off YouTube and these backed me up - too much of a faff.

So Rebif it was - sub-cutaneous injections three times a week but with the downer that it had to be kept in the fridge.

Eventually a large box with all the gubbins turned up with my monthly courier. By all the gubbins, I mean travel cool-bags (one large, one small), rebijector (injection pen), supporting literature, diary, "passports," sharps bin, injection site cushion (that I could heat or freeze), and the medication itself.

Two weeks at 8mg and two weeks at 22mg, and then I could expect a delivery of the 44mg syringes.

I have to say that I did get flu-like side-effects with Rebif, but it's a case of knowing when to take them. I noticed that it took a while before any nastiness kicked in, so if I remember, I take them relatively early in the evening and then sleep through the after-effects. I also take them on Sunday, Tuesday and Thursday to keep the morning-after hangover in the more-managable work environment and away from family quality time. The worst day of side effects happened when I had the mother of all hot flushes, stepping out to my car at 6am in just a summer dressing gown, thinking that it was quite mild, only for it to be minus seven when I checked my in-car thermometer later.

I found that the side-effects became less severe after about three or four months and if I get any side effects now, I don't notice them.

All-in-all, I have been quite lucky with Rebif. Nothing as bad as the horror stories I have read in online discussion forums. Of course, it's early days and it remains to be seen if the drugs do their job of slowing down the disease's progression.

2009 update >

DeViL'sArse

I'm not in the habit of complaining, and I don't want to be the sort of person who does, but the Driver and Vehicle Licensing Agency (DVLA) have seen fit to part me from my driving license.

Apparently multiple sclerosis falls into a category of degenerative medical conditions whereby I can only be issued with a short-term (three year) license. When this runs out I will be sent a "computer generated form" and asked to re-apply. I only hope it doesn't result in the hopeless correspondence I have experienced with the DVLA so far, which has involved all sorts of irrelevant questioning on their part and needless reiteration on mine.

The definition of discrimination includes "Treatment or consideration based on class or category rather than individual merit" (source: Wiktionary), which is surely what this is, because apart from the DVLA's decision, I am legally obliged (along with the rest of the population) to inform them of any deterioration in my health anyway.

I have sent my license off to Swansea, before they officially revoke it. I can appeal if I want, but if I did it would be on behalf of people in the UK with MS rather than on my own individual circumstance. I have checked out the Disability Discrimination Act (the legal eagle that I am!) and there appears to be a clause whereby this sort of thing is allowed if an Act of Parliament requires it, so it's set in law. In this case, I think the law is the DeViL'sA**e

Reading and MS

I used to read a book a week. Every lunchtime, I'd grab some fresh air and sit by the canal with the latest piece of weirdness that I'd picked up at Waterstones. Every evening I'd lounge with my face buried between the pages while my wife sat next to me watching telly.

That all disintegrated five years ago at the same time as my first major MS relapse. I had a stressful time of it, working in a new job that I hated and a newborn baby waiting for me at home. The stress probably triggered the relapse but I didn't really have the time to read anything in the evening, anyway.

These days, I really like the idea of reading but find that I simply can't. My MS makes it difficult to concentrate when I get tired and at the end of a day spent in front of a computer screen, my eyes will jump around. Any attempt to read more than the few pages I read to my daughter before bedtime requires great effort and sends me to sleep and the very prospect of reading makes me feel tired.

I have tended to substitute for it by immersing myself in films instead.

I am wondering if graphic novels might be a way of re-building my reading stamina. If I only have to read dialogue and the odd caption, it may take a lot of the fatigue out of reading and restore the enjoyment of a good book. It is something I intend to explore.

Terrorists

The best analogy of MS I have read in a long time comes from an interview with the graphic artist Johnny Hicklenton. Johnny is the subject of an award winning film "Here's Johnny" which follows his life and increasing disability for seven years after his diagnosis. He likens MS to terrorist activity.

This makes perfect sense to me - each relapse a terrorist attack, each course of steroids the emergency services attempting to mop up the disaster scene and the disease modifying drugs the equivalent to the intelligence services reducing the terrorist activity.

Here's Johnny makes it's network premiere in the UK on Tuesday 17 February on More 4 at 10pm. Johnny has a more progressive form of MS than I currently have, so even though I am greatly looking forward to seeing it, I will be viewing with some trepidation for what might be.

Some relevant links:
Here's Johnny website
Interview in the Daily Telegraph

Psycho swat team

I caught something on TV the other night about someone who had a minor stroke while on holiday in the UK. As a result, he could no longer read when he woke up. He knew the individual letters on his hotel shampoo bottles, but couldn't string them together into words. Even though they were written in English, he was convinced they were written in a foreign language.

While this in itself is odd, the thing that struck me was that he informed his wife he couldn't read, She didn't believe him and he put it to one side mentally. He then just carried on as normal until later when he had to read something else and it all came back to him.

This reminds me of the time I first noticed my doublevision. I can't put an exact date on when it happened, other than it was March/April 2008 and I was at work when I noticed it. I found it odd and I tried to put it right by trying to un-cross my eyes. When I found that I couldn't, I just carried on doing what I was doing, double-checking it was still there every now and then. I think I thought "It'll go..." until a few days later when it obviously wasn't going to go. Nearly a year later it's still there.

I wonder if the magical brain somehow cushions the shock caused by the injury by despatching some sort of psychological swat team - convincing the mind that the doublevision or inability to read is a normal thing and to carry on as normal. And I wonder if the man with a stroke would have noticed his inability to read if he had been at home instead of on holiday. I wonder if he would have carried on as normal for days, avoiding books or newspapers before it started to bother him.

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."

Relapse??

I'm a bit worried I might be starting to relapse again. My optic neuritis seems to have returned in my left eye - I have been having speckled lights in my vision and pain when looking round. So far, only one large white phosphene. The other day my head went tingly as I drove home from work and I've had the hot cold feet and quite a severe flare up of leg pain (the ants / woodlice trying to get out).

If it's still a concern on Monday, I will phone my nurse and ask her advice, though the optic neuritis doesn't (so far) seem as bad as 2004.

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 >

So long Gabapentin!

With the backing of my GP, I have ditched Gabapentin.

It has been making me feel crap for a while, now. The main side effects being fatigue and hallucinations. I was starting to fall asleep by 7pm every day. As an experiment, I tried a couple of days over Christmas without taking the pills and I instantly felt better. I took my last pill three days ago and my wife has since remarked that I look a lot better and I am chirpier in the mornings.

It seems to me that while G didn't rid me of symptoms completely, it must have had some dampening effect. My hands, feet and leg feel three times as bad as they did a week ago, and my calves and feet were excruciatingly crawly last night but - you know what? I'd rather have that than the side-effects.

Now I can be more in tune with how my body is feeling, particularly as a lot of G's side-effects mirror (and mask) general MS symptoms anyway.

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 >