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?
Thanks to the MS Trust, by the way, for linking to me from their Facebook page. Reespec back atcha!
Showing posts with label history. Show all posts
Showing posts with label history. Show all posts
Thursday, 8 October 2009
Thursday, 4 June 2009
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.
Thursday, 19 March 2009
My MS History - Part Six
For the story so far...
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 >
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 >
Tuesday, 3 February 2009
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:
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 >
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.
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 >
Thursday, 15 January 2009
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 >
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 >
Monday, 5 January 2009
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 >
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 >
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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