There is a stand up routine by Sean Lock where he recounts being told off for swearing by belligerent airport staff. His exasperated reply finishes with "This is exactly the sort of occasion swearing was f***ing invented for!"
Excuse me a moment...
a$%e!... &u$%&!!... (%d%*!!!.... %^&*!! f&*^:~!!.... *()&*&^$%$"!!!!!!
There - out of my system...
No, wait, hang on...
%&^*£$^%$!!
There. Feel a bit better, now.
I went to see an orthoptist about my doublevision, nystagmus, intranuclear opthalmoplegia and oscillopsia the other day.
I spent about an hour undergoing various tests. I followed a torch with my eyes. I had various lenses passed in front of each of my eyes and I had to say when the image became double and single. I pointed at dots with a long stick (and missed). I looked at various patterns to find the hidden 3D shape and of course I read the all too familiar eye chart.
Things I didn't know before: I also have doublevision looking up to the right and my left eye doesn't pull in towards the nose as much as it should do.
I have been looking forward to my doublevision being sorted for the last year and a half. As I mentioned in my last post, this is the one constant symptom, the one that doesn't fade away and then come crashing back. The symptom that is constantly breathing down my shoulder reminding me I have MS and it is the symptom that spurred me on into visiting the GP in the first place.
It is also (as I screw up one eye to look at you) a symptom that makes me feel dizzy, tires me out, drags me down and makes me look like a weirdo. I was convinced that the magical people in the eye department of my local hospital would be able to build me prism lensed spectacles to straighten things out for me. Not to wear all the time, you understand, just when I'm at work, or in a meeting, or driving my car, or walking along the street. I'm not asking for much really. Just some semblance of normality.
"Sorry, there's nothing we can do..."
Apparently, they can't (or won't) correct doublevision unless it occurs in the primary position (straight ahead). Also, my eyesight is pretty good - I can read most of the bottom line on the eye chart and if I did have glasses, they would have to be plain glass and the prism lens would blur things a bit for me.
So there I was watching the orthoptist as he moved his head left and right to demonstrate how you look left and right.
Yes, I should be grateful for the fact that I can see, and yes, I should be grateful for the fact that I can see pretty well and yes, it could be a whole lot worse - a hell of a lot worse. I could have been maimed in an accident, I know. But days like this remind me that MS is a complete an utter uncurable bastard. Things will never be the same. I will never be able to look around with my eyes travelling the same speed again. I will never be able to look left and see a single image. I will never be able to look right and keep my eyes perfectly still. I will never be able to read a book without it tiring me out. Things will never be how they used to be.
So when someone tells you there is nothing they can do, that little ember of hope at the back of the hearth that you thought might be coaxed back to life with some newspaper and a bit of careful blowing, is snuffed out with a gallon of water.
And what makes it all so much worse is that I will probably look back on this day and think how lucky I was back then compared to how I am 'now'.
Doublevision is one of those symptoms that can come and go in Relapsing Remitting MS, but I'm pretty sure that after a year and a half we're not just talking about demyelination on the nerve controlling eye movement. I think there's been some permanent damage.
I have an appointment with an opthalmologist in a couple of weeks and they want to look at the back of my eyes and document the "state of things" I guess. They will probably also want to patronise me by telling me stuff I already know about nerve damage and so on.
So, having taken the knock and bottling up all the crestfallen feelings I'm back to the bustle of the hospital lobby. Past the people in Costa coffee. Skirting the guy with the mop and the couple with the walking frames. Through the automatic doors, past the A & E entrance, then the maternity wing with a handful of expectant mothers in dressing gowns, fags in hands.
Back to the car...
Negotiating the one-way system through the car parks...
Waiting for the ambulance to go past...
out onto the main road...
Whack the stereo on full blast to take my mind off things as I head back to town...
The music starts: "There's no escaping from / the man it seems that I've become..." *
... The grief.
* test your music trivia - identify the track and you may or (more likely) may not win a prize (not decided yet, but nothing big).
Showing posts with label GP. Show all posts
Showing posts with label GP. Show all posts
Thursday, 10 December 2009
Monday, 7 December 2009
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.
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.
Tuesday, 4 August 2009
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
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
Monday, 3 August 2009
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.
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.
Thursday, 18 June 2009
One year on ...
Today is the first anniversary of my diagnosis (see MS History - part two).
Health professional bodycount so far.
Starting with the first GP visit last year, the bodycount is as follows
Symptom recap:
Current symptoms:
Health professional bodycount so far.
Starting with the first GP visit last year, the bodycount is as follows
- GPs 4
- Practice Nurses 2
- MS nurse 1
- Ward nurse 1
- Occupational Health nurse 1
- Phlebotomists 6 (estimate)
- Physiotherapists 1
- Neurologists 5
- Neuro-psychologists 2
- Radiologists 4
Symptom recap:
Current symptoms:
- mild optic neuritis (since Jan '09)
- doublevision / nystagmus / intra-nuclear opthalmoplegia / oscillopsia
- fatigue
- tingling / pins and needles
- neuropathic pain in legs
Symtoms that have cleared up for now:
- L'Hermitte's sign
- vertigo
- muscle weakness
- involuntary muscle movement
Monday, 27 April 2009
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
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
Friday, 24 April 2009
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.
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.
Monday, 23 March 2009
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.
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.
Friday, 30 January 2009
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
Monday, 5 January 2009
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.
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.
Friday, 2 January 2009
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 >
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 >
Monday, 15 December 2008
My MS History - Part One
Once somebody tells you, you have MS, you start to put a jigsaw together. You wonder whether that strange tingling sensation you had in your right arm last year had something to do with it, or in my case the vertigo diagnosis from the previous year and the little numb patch between my big toe on my right foot and the others.
It all happened at roughly the same time, but seemingly by stealth as I can't put an exact time or date on it. My old office at work used to look out onto rolling Derbyshire scenery. In the distance there was a radio mast on top of one of the hills. I remember looking up at that radio mast and hilltop one morning to see two radio masts and hilltops, but weirdly, only when I looked left. Also, when I hammered away at my computer keyboard, I noticed that my fingers felt a bit tingly. 'RSI?' I wondered.
I had recently had delivery of a new computer at work and I moved my workspace around and shifted my desk from one side of the room to the other. When this sort of thing happens, my employer automatically sends a health and safety person round to look at how you are sitting, whether the new screen you have is causing any eye problems ("Yeah, well I do have this problem with double-vision"), or whether your seat is suitable ("Funny you should say that, but I get this strange electrical tingling sensation down my back and into my thighs when I put my chin to my chest"). The double-vision I put down to eye strain as I had other unexplained problems with my eyes a few years before (this particular jigsaw piece hadn't dropped into it's slot at this point).
The health and safety guy, barely into his twenties, was non-plussed. "Maybe ask your GP," was his suggestion.
"Yeah... maybe I will"
I recounted my recent problems to my brother shortly afterwards while watching Man City lose to Fulham at the City of Manchester stadium. "If you were a TV, I'd take you back to the shop" was his comment. This made a lot of sense, and I needed to see my GP about something minor anyway - I needed a wart removing from my lip. I could always mention this weird stuff at the end as an aside.
I saw a locum GP - Dr E. It turned out that the wart was the least of his concerns. He did various tests. I had my reflexes tested, I watched his finger move left to right, I stood on one leg, I touched my nose then his moving finger then my nose and so on. He booked me in for an emergency CT scan at the Hallamshire Hospital in Sheffield - I should get an appointment within the fortnight he said. He thought everything I was experiencing was connected somehow, but wouldn't be drawn on what it might be apart from that it might be something pressing on my spinal cord. "Basically, where my expertise ends, someone else's begins..." were his words. "Take it easy, don't do anything strenuous, no heavy lifting, look after yourself, be selfish, let others take the strain for a while." A GP has never said anything like this to me before, my previous visits had always been met with a "don't worry about it, it'll go away" air about them.
I thought of the heavy suitcase that I had to load and lift into the car, ready for our family holiday in a couple of day's time. "I'm going on holiday at the weekend." I explained.
"Where are you going?"
"Cornwall."
"That's good. They have hospitals down there."
"You've got me worried now," I laughed. . . no flicker of a smile on Dr E's face.
As I left the surgery, I felt the weirdest sensation. Something other-worldly, like I had been given a serious secret assignment.
I had a door with what could be a monster lurking behind it. All I had to do was find the key.
Part 2 >
It all happened at roughly the same time, but seemingly by stealth as I can't put an exact time or date on it. My old office at work used to look out onto rolling Derbyshire scenery. In the distance there was a radio mast on top of one of the hills. I remember looking up at that radio mast and hilltop one morning to see two radio masts and hilltops, but weirdly, only when I looked left. Also, when I hammered away at my computer keyboard, I noticed that my fingers felt a bit tingly. 'RSI?' I wondered.
I had recently had delivery of a new computer at work and I moved my workspace around and shifted my desk from one side of the room to the other. When this sort of thing happens, my employer automatically sends a health and safety person round to look at how you are sitting, whether the new screen you have is causing any eye problems ("Yeah, well I do have this problem with double-vision"), or whether your seat is suitable ("Funny you should say that, but I get this strange electrical tingling sensation down my back and into my thighs when I put my chin to my chest"). The double-vision I put down to eye strain as I had other unexplained problems with my eyes a few years before (this particular jigsaw piece hadn't dropped into it's slot at this point).
The health and safety guy, barely into his twenties, was non-plussed. "Maybe ask your GP," was his suggestion.
"Yeah... maybe I will"
I recounted my recent problems to my brother shortly afterwards while watching Man City lose to Fulham at the City of Manchester stadium. "If you were a TV, I'd take you back to the shop" was his comment. This made a lot of sense, and I needed to see my GP about something minor anyway - I needed a wart removing from my lip. I could always mention this weird stuff at the end as an aside.
I saw a locum GP - Dr E. It turned out that the wart was the least of his concerns. He did various tests. I had my reflexes tested, I watched his finger move left to right, I stood on one leg, I touched my nose then his moving finger then my nose and so on. He booked me in for an emergency CT scan at the Hallamshire Hospital in Sheffield - I should get an appointment within the fortnight he said. He thought everything I was experiencing was connected somehow, but wouldn't be drawn on what it might be apart from that it might be something pressing on my spinal cord. "Basically, where my expertise ends, someone else's begins..." were his words. "Take it easy, don't do anything strenuous, no heavy lifting, look after yourself, be selfish, let others take the strain for a while." A GP has never said anything like this to me before, my previous visits had always been met with a "don't worry about it, it'll go away" air about them.
I thought of the heavy suitcase that I had to load and lift into the car, ready for our family holiday in a couple of day's time. "I'm going on holiday at the weekend." I explained.
"Where are you going?"
"Cornwall."
"That's good. They have hospitals down there."
"You've got me worried now," I laughed. . . no flicker of a smile on Dr E's face.
As I left the surgery, I felt the weirdest sensation. Something other-worldly, like I had been given a serious secret assignment.
I had a door with what could be a monster lurking behind it. All I had to do was find the key.
Part 2 >
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