This is the day of the consultation and I sit quietly, thinking, on the journey and in the waiting area. I left the Nintendo at home but made sure I had enough music on my phone to distract me without being too repetitive. Was this a good idea? Not if you are as inquisitive and chatty as me! I would rather chat to the other patients in the waiting area. It is true what they say – there is always someone worse off than you, people who cant use their legs at all and all sort of viruses I discovered later were around.
The Neurologist came and introduced himself and shook my hand saying he wouldn't be long, I felt to make sure I hadn't accidentally left my crown or tiara on.
I was weighed, which proved my scales were correct, and blood pressure taken. I have lost just over a stone in the past year and dropped 4 dress sizes in 18 months without trying not that I'm complaining, I needed to lose it plus some more.
Then came the consultation which consisted of thousands of questions about my health and various tests as before, The only problem was my brain – it was on holiday, a situation common in MS and so excused by the doc, I did explain that it is normal for me.
A student was sat in on the consult and the doc was fascinated by my eye movements the student said I was a perfect example of something but I cant remember what! I am sure it wasn't an insult though.
I had to try and balance on each leg – failed that! I had to walk in a straight line – failed that! Finally after loads moire questions that luckily mostly needed Yes/No answers I was told that I had been misdiagnosed regarding my Fibromyalgia and it was definitely MS.
I didn't know until then that there are different types – these are the two main categories
Secondary Progressive MS
Most people with relapsing remitting MS eventually develop ‘secondary progressive’ MS – around 65 per cent have developed it after 15 years.
Secondary progressive MS, as the name suggests, sees a progressive increase in people’s symptoms, but this progression can be very slow. Changes might be so slight that they are hard to notice for a long time.
Primary Progressive MS
Primary progressive MS affects about 10 to 15 per cent of people diagnosed with MS. It is called this because from the first (primary) symptoms it is progressive. Symptoms gradually get worse over time, rather than appearing as sudden attacks (relapses).
To get a definitive answer I would need further tests of a different sort, and so started my life as a pincushion.
A blood test straight away was needle number 1 and a urine test to make sure I had no infection so I could be given steroids to make me feel better, apparently any future 'relapses' would be treated in hospital with intravenous steroids but, because there was no definitive type yet I was given steroid tablets.
The MS nurses were introduced to me and took me to their office in order to answer any questions I may have but, as anyone who knows me will tell you, information has to rattle round inside my head for a while before it finds a way out of my mouth. Again I was told that was normal with MS, and the MS Nurse would be doing a follow up visit at my home in about 10 days time.
School was now at the beginning of term, lessons in MS were on the curriculum and it looks like it is going to be a long term,
Thursday, 19 November 2009
Tuesday, 17 November 2009
THE END OF DISCOVERY AND THE BEGINNING OF LEARNING
Well now I knew the Neurosurgeon's educated opinion and the words were out there in the ether. Once said words can never be unsaid all that can be achieved is clarification. People, trying to be helpful, such as my other half, pointed out that until I had seen the Neurologist nothing was definite. [That was true so ALAN WHY DID YOU TELL PEOPLE???] I didn't tell anyone except close family and friends, excluding my Mother, after all when they said it wasn't that would mean fewer people to have to explain to.
I became an avid letterbox watcher, anticipating a letter from the hospital, After 3 weeks I rang the hospital as the Neurosurgeon had suggested to see how much longer my 'urgent' appointment would be. I was getting anxious because every time I sneezed or coughed I had, and still have, a searing pain in one of my temples and so taking a lot of paracetamol, a fact that I was uncomfortable with.
No appointment was forthcoming and, frankly, the admin staff at the hospital was less then helpful. I told my GP and the reaction I got was more worrying than hearing nothing. I was told that I DID need an urgent appointment because I needed to start treatment as soon as possible but that still did not make me realise the seriousness of the illness, I needed the consultation to for my own peace of mind. Peace of Mind??! More like Piece of Mind or Mind in Pieces.
Eventually the follow up appointment with the Neurosurgeon arrived, 4 months after the consultation where I had first been told MS. The Neurosurgeon was not best pleased that I hadn't heard anything and even before I entered his consulting rooms he wanted to know why. I must say I enjoyed watching the admin staff wriggle out of that, eventually the reason given was that the Neurosurgeon had not 'ticked' the correct box. Looking back I didn't realise just how many different departments would be involved and therefore it was reasonable that the Neurology Department need a definite referral i.e. the correct boxes ticked before they begin to notify the other departments,
Eventually the appointment day with the Neurologist arrived – it had only taken 4.1/2 months instead of the 3 weeks originally indicated. I was relieved that at last I would have an answer. Little did I realise how much and how dramatically my life would change.
My next posting will pick up at that point and begin telling you about the process of my learning.
I became an avid letterbox watcher, anticipating a letter from the hospital, After 3 weeks I rang the hospital as the Neurosurgeon had suggested to see how much longer my 'urgent' appointment would be. I was getting anxious because every time I sneezed or coughed I had, and still have, a searing pain in one of my temples and so taking a lot of paracetamol, a fact that I was uncomfortable with.
No appointment was forthcoming and, frankly, the admin staff at the hospital was less then helpful. I told my GP and the reaction I got was more worrying than hearing nothing. I was told that I DID need an urgent appointment because I needed to start treatment as soon as possible but that still did not make me realise the seriousness of the illness, I needed the consultation to for my own peace of mind. Peace of Mind??! More like Piece of Mind or Mind in Pieces.
Eventually the follow up appointment with the Neurosurgeon arrived, 4 months after the consultation where I had first been told MS. The Neurosurgeon was not best pleased that I hadn't heard anything and even before I entered his consulting rooms he wanted to know why. I must say I enjoyed watching the admin staff wriggle out of that, eventually the reason given was that the Neurosurgeon had not 'ticked' the correct box. Looking back I didn't realise just how many different departments would be involved and therefore it was reasonable that the Neurology Department need a definite referral i.e. the correct boxes ticked before they begin to notify the other departments,
Eventually the appointment day with the Neurologist arrived – it had only taken 4.1/2 months instead of the 3 weeks originally indicated. I was relieved that at last I would have an answer. Little did I realise how much and how dramatically my life would change.
My next posting will pick up at that point and begin telling you about the process of my learning.
Saturday, 14 November 2009
NEARLY MODERN
Where was I?
Oh yes!
I was at my Neurosurgeon appointment for the numerous scans and tests results.
The brain and neck scans were no problem unless you were claustrophobic, each needing the to be placed differently – the brain scan needed the head to be kept still and so I was wearing a helmet like American footballers wear for protection. I actually found it very comfortable just lying still for 20 minutes, in fact, I was just about dozing when suddenly it was over.
X-Rays we all know very well from personal experience or security systems. [Unfortunately I hadn't any fish-bones or coins to display on mine]
The nerve conduction tests seemed more intimidating but were, at worst, momentarily uncomfortable. Electrodes were placed at intervals on my arm and the nerves stimulated by very mild electric shocks similar to the sensation felt when you knock your elbow. [Funny Bone Funny Bone? Who thought up that? Or is it some form of sarcastic wit?]
The Neurosurgeon looked at all the information and performed numerous tests of his own, pointing out to me the various points of interest [a tour inside my own head [useful], but this tour didn't include local landmarks and a tour guide holding up a rolled-up umbrella, This was an educational trip, I was being taught the basic of how the brain worked]
After many more tests such as on reflexes, and if I could feel the pins he sharper in any specific areas [is he an acupuncturist in his spare time?] accompanied with lots of Mmms and Ahas he took me back to his office and made his proclamation – he thought the results indicated MS but it would need a consultation with the Neurologist, my case would be classed as urgent and he would expect me to be seen within a month,
So I left his office with more of an answer than previously, but a 3 week wait seemed an eternity to me. but patience is a virtue they say. Patient patients is that not what the NHS is built upon?
In the meantime I was attending the Uroloogy Clinic where discussions where under-way regarding my bladder problems when possibility of MS was mentioned the Urologist wasn't surprised and I was put forward to have an in-dwelling catheter fitted, possibility before 2010. Because of my lack of dexterity and other problems along with the new diagnosis of MS I would have to be in hospital for approximately 3 days and be fitted with Supra Pubic type catheter. A what? The dictionary says a suprapubic cystostomy is a surgically-created connection between the urinary bladder and the skin which is used to drain urine from the bladder in individuals with obstruction of normal urinary flow. In other words I will have to wear a bag and valve system, Which doesn't sound too enthralling but will greatly enhance my life, not being affected by gravity and no leakage. Not only that but I will be able write the snow as good as any man!
I was surprised at the time scale because I naively had though it would be carried out in at Day Surgery. Stoopid, I hadn't been allowed to drive for 6 weeks whent I had my appendix out so why had I thought this would be any different? As I said previously my life without challenge wouldn't be my life.
Oh yes!
I was at my Neurosurgeon appointment for the numerous scans and tests results.
The brain and neck scans were no problem unless you were claustrophobic, each needing the to be placed differently – the brain scan needed the head to be kept still and so I was wearing a helmet like American footballers wear for protection. I actually found it very comfortable just lying still for 20 minutes, in fact, I was just about dozing when suddenly it was over.
X-Rays we all know very well from personal experience or security systems. [Unfortunately I hadn't any fish-bones or coins to display on mine]
The nerve conduction tests seemed more intimidating but were, at worst, momentarily uncomfortable. Electrodes were placed at intervals on my arm and the nerves stimulated by very mild electric shocks similar to the sensation felt when you knock your elbow. [Funny Bone Funny Bone? Who thought up that? Or is it some form of sarcastic wit?]
The Neurosurgeon looked at all the information and performed numerous tests of his own, pointing out to me the various points of interest [a tour inside my own head [useful], but this tour didn't include local landmarks and a tour guide holding up a rolled-up umbrella, This was an educational trip, I was being taught the basic of how the brain worked]
After many more tests such as on reflexes, and if I could feel the pins he sharper in any specific areas [is he an acupuncturist in his spare time?] accompanied with lots of Mmms and Ahas he took me back to his office and made his proclamation – he thought the results indicated MS but it would need a consultation with the Neurologist, my case would be classed as urgent and he would expect me to be seen within a month,
So I left his office with more of an answer than previously, but a 3 week wait seemed an eternity to me. but patience is a virtue they say. Patient patients is that not what the NHS is built upon?
In the meantime I was attending the Uroloogy Clinic where discussions where under-way regarding my bladder problems when possibility of MS was mentioned the Urologist wasn't surprised and I was put forward to have an in-dwelling catheter fitted, possibility before 2010. Because of my lack of dexterity and other problems along with the new diagnosis of MS I would have to be in hospital for approximately 3 days and be fitted with Supra Pubic type catheter. A what? The dictionary says a suprapubic cystostomy is a surgically-created connection between the urinary bladder and the skin which is used to drain urine from the bladder in individuals with obstruction of normal urinary flow. In other words I will have to wear a bag and valve system, Which doesn't sound too enthralling but will greatly enhance my life, not being affected by gravity and no leakage. Not only that but I will be able write the snow as good as any man!
I was surprised at the time scale because I naively had though it would be carried out in at Day Surgery. Stoopid, I hadn't been allowed to drive for 6 weeks whent I had my appendix out so why had I thought this would be any different? As I said previously my life without challenge wouldn't be my life.
Friday, 13 November 2009
CONTINUING MY BACKROUND STORY
Part III - I am getting up to date - Honest - Slow but Sure
I ended that last post with life as it was at the end of 2006, and so my world continued for a while.
2008 was the year when things I started to get answers, [Started I said]
In early 2008 my Mother had a continuous pain in her back and further examinations showed it to be osteoporosis, and, as she had 10 concrete steps up to her door level, and another 3 to the door, the GP recommended that she move to a level access property. Was that fun! She needed to be in the same area because she didn't want change GP surgeries, and it had to be accessible for me on my mobility scooter.
Oh what fun and games began then! I was travelling to the local housing department about 3 times a day and in-between trying to help my mother do the preparations for moving. I was putting myself under an enormous amount of stress I know but what alternative was there? After two weeks of this strain I lost the use 0f my right hand.
I am right handed so couldn't write, use a keyboard 'blind' as I had been taught or even hold anything securely, my hobbies have always involved writing and dexterity so being unable to use my right hand depressed me.
I remember saying at the time I thought it was stress related and being told not to be silly but my instincts were to be proved right – note to self, ALWAYS, but ALWAYS listen to your body.
I continued with an annoying hand hoping the use would return at some point. But, as fate dictated, the hand did not improve, and I was now getting pains in my neck. Time for another GP appointment methinks. I was referred to a Neurosurgeon and X-rays. The X-rays showed that the Spondylosis had progressed downward and was now affecting 3 neck discs whereas it had been 2 before. My GP suggested that there may be an operation that could release a possible trapped nerve. I hoped and hoped that it could be done and then I could return back to some sort of normality in my life. I had forgotten that 'normality' was something that my life seems to avoid like the plague.
I now had to wait for the Neurosurgical appointment – a letter to attend for a MRI scan for my neck arrived in December 2008. The only problem was it was at a different hospital [although still local], and using a portable unit, which was just like a very large removal van and in a crowded car park. The technician told me the results would take about 7 weeks as they had to go halfway around the world first.
Back to the neurosurgeon for the result, he wanted another MRI and brain scan. The shock was that they had actually found a brain the first time. I hadn't believed there was one there. Maybe it was having a rest? No. it was busy plotting and planning how best to mess up my life.
Now it was early summer 2009 and I was back with the Neurosurgeon after having had in total 2 brain scans. 1 neck scan, 2 X-rays and 1 Nerve Conduction Test. Surely this amount of technology wouldn't be wasted. I believe that any problem can be solved/answered by technology if used correctly.
I ended that last post with life as it was at the end of 2006, and so my world continued for a while.
2008 was the year when things I started to get answers, [Started I said]
In early 2008 my Mother had a continuous pain in her back and further examinations showed it to be osteoporosis, and, as she had 10 concrete steps up to her door level, and another 3 to the door, the GP recommended that she move to a level access property. Was that fun! She needed to be in the same area because she didn't want change GP surgeries, and it had to be accessible for me on my mobility scooter.
Oh what fun and games began then! I was travelling to the local housing department about 3 times a day and in-between trying to help my mother do the preparations for moving. I was putting myself under an enormous amount of stress I know but what alternative was there? After two weeks of this strain I lost the use 0f my right hand.
I am right handed so couldn't write, use a keyboard 'blind' as I had been taught or even hold anything securely, my hobbies have always involved writing and dexterity so being unable to use my right hand depressed me.
I remember saying at the time I thought it was stress related and being told not to be silly but my instincts were to be proved right – note to self, ALWAYS, but ALWAYS listen to your body.
I continued with an annoying hand hoping the use would return at some point. But, as fate dictated, the hand did not improve, and I was now getting pains in my neck. Time for another GP appointment methinks. I was referred to a Neurosurgeon and X-rays. The X-rays showed that the Spondylosis had progressed downward and was now affecting 3 neck discs whereas it had been 2 before. My GP suggested that there may be an operation that could release a possible trapped nerve. I hoped and hoped that it could be done and then I could return back to some sort of normality in my life. I had forgotten that 'normality' was something that my life seems to avoid like the plague.
I now had to wait for the Neurosurgical appointment – a letter to attend for a MRI scan for my neck arrived in December 2008. The only problem was it was at a different hospital [although still local], and using a portable unit, which was just like a very large removal van and in a crowded car park. The technician told me the results would take about 7 weeks as they had to go halfway around the world first.
Back to the neurosurgeon for the result, he wanted another MRI and brain scan. The shock was that they had actually found a brain the first time. I hadn't believed there was one there. Maybe it was having a rest? No. it was busy plotting and planning how best to mess up my life.
Now it was early summer 2009 and I was back with the Neurosurgeon after having had in total 2 brain scans. 1 neck scan, 2 X-rays and 1 Nerve Conduction Test. Surely this amount of technology wouldn't be wasted. I believe that any problem can be solved/answered by technology if used correctly.
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