It's Been A While!

Firstly, I have to apologise for not updating the blog in such a long time!  The reason for this is actually a GOOD one :)  I've started back at work and they really are keeping me busy!  I tried working a full week when I got back from my holiday to Rhodes, but it was a little too much, too soon.  So my workplace and I have come to an arrangement where I work in the office part of the week and then from home for the rest of the week.  The downside is that I'm still continuing to play catch up and as a result I'm working 12 to 13 hours a day when I'm at home.  It's easy to switch off once you have left the office, even if that isn't until 7pm, and especially so when there is an hour and a half commute either way.  But working from home doesn't give you the separation. If this is a neurological disease, most of which are often triggered by stress and exhaustion, then I am going to have to learn how to step away and relax - and not the type of relaxation that comes from sinking a bottle of wine.  Bear thinks that I need a hobby.  Swimming and running were my hobbies but at the moment I'm not brave enough to restart either these just yet.  Maybe I will learn to knit!

Overall, so far, so good.  The fatigue is gradually ebbing away, my legs are getting stronger (albeit of a morning I still feel like I'm wading through water, but this improves as the day passes), my eyes have stopped stinging - actually I must give Bear some credit for this, he popped to the shops one Saturday afternoon (I refused to be budged from the sofa; the weekend = guilt-free slobbing) and came back with a selection of items:  a large box of After Eights, Cosmopolitan magazine, Original Source shower gel and bubble bath (my favourite) and some Optrex dry eyes spray.  Bless him - random but very thoughtful.  The fogginess that plagued my ability to think quickly has lifted and although I still can't do two things at once very well, I feel that I can mentally see a bigger picture and solve problems quicker.  My memory still isn't back to normal, it takes me a long time to recall books that I read a couple of weeks ago or even specific words - I have to describe the word to Bear who then looks at me like I'm a bit of an idiot!

There is another new symptom though - muscle spasms.  When lying in bed my upper leg muscles contract and jerk my left leg upwards, which has, so far, only happened once on Wednesday night.  According to Bear it continued for half an hour after I had fallen asleep and he wasn't especially happy that he didn't manage to get to sleep until gone 1am!  Oh well, it's sweet revenge for all of the nights his snoring has kept me awake.

A number of people have mentioned Lyme Disease to me and the possibility that this could be the cause of my problems as opposed to MS.  I did mention in my first blog that blood samples had been sent to Serology whilst I was in A&E to test for both Lyme and Weil's Disease.  The former was particularly relevant because I had been bitten, by what I had assumed to be a mosquito, on my right leg whilst at Peterborough Beer Festival the Saturday of the August Bank Holiday.  It was held in the middle of a field on quite a damp day, and who knows if there could have been ticks in the area.  The rash that developed over the course of the next day was that of a "bullseye" rash, which is typical of a tick bite - an example is below:

It has crossed my mind that this could be the cause for all of the symptoms, as Lyme Disease has very similar symptoms.  There is clinical evidence that in the later stages of Lyme Disease demyelinating involvement of central nervous system can develop and MS can be erroneously diagnosed.  This is very interesting given that my most recent brain scan showed evidence of possible demyelination.  Whilst I have many friends and family telling me that Lyme Disease would be the "lesser of two evils", it worries me a tremendous amount that if it has advanced to the point where it is has caused signal change in my brain then it is most likely to have caused permanent damage and cause episodic flare up of symptoms.  I don't yet know enough about the treatment of Lyme Disease, but at the moment the only saving grace is that whilst it mimics MS it may not become progressively worse and debilitating.

Testing, Testing, 1.2.3.

Yesterday I had NCS & EMG tests.  The Neurophysiologist asked me about my history, why I came to A&E and what conclusions other tests had come to so far.  I explained that the brain scan showed signal changes and presented the possibility of demyelination.  He explained that the above two tests would show whether the physical problems that I presented to A&E in August were physiological as opposed to neurological.  If the tests were abnormal it would suggest that the cause of my back pain and left leg weakness were due to physical nerve damage, sciatica or disc problems.  The MRI scan of my lumbar spine had been normal, only showing evidence of a "dehydrated spine" (I still don't know what this means so if anyone cares to enlightened me please feel free to comment!), so I was confident that it wouldn't be the latter of the three aforementioned diagnoses.  He suggested that it would most probably be a normal result given that the head MRI had shown what it did.

The NCS test had me yelping like a little yappy dog!  The chap put electrodes on to my legs and then sent an electrical impulse through my nerves - gaaaaaaah.  It was only a slight electrical tapping feeling but it made me feel like SUCH a wimp!  Bear was, unsuccessfully, trying to muffle his laughter from the corner of the room.  It wasn't unpleasant as such; it felt just like one of those electric shock games that you unearth from the "Christmas games" pile in the back of a dusty cupboard every year, where the last player to press their button when the light goes off gets a sharp and startling electric shock.  The second test, EMG, was admittedly unpleasant.  A small needle was inserted in to my shin, calf muscle and ankle joint (the type of needle, for example, when you have a blood sample taken) and then I to move my muscles in specific directions whilst the electrodes recorded muscle fibre activity.  The output of this was noise, so I actually got to hear my muscles working.  Very strange.  Anyway, I digress.  The tests were... surprise, surprise, normal.  The Neurophysiologist was not surprised by this and said that he would report his findings to Dr Bains, but overall this was an indicator that the issue is Neurological.  So, another pointer in the direction of MS, or whatever other Neurological condition this could be.

Interested in what else this could be, I did what every other person normally does in this situation.  I Googled 'causes of demyelination'.  The two main conditions that came up in the results were Multiple Sclerosis and Progressive Multifocal Leukoencephalopathy.  There were some other rarer conditions, none of which I fell in to the categories of a typical 'sufferer'.  This is obviously for the Neurologist, who is better armed with a wealth of training and knowledge, to determine the cause, but I would expect that it is neither these conditions, nor indeed Progressive Multifocal Leukoencephalopathy.  My money is going on MS.  Bear asked me an interesting question on Thursday evening, "What are you going to do if it's not MS?  You will have to change the name of your Blog!"  It's a fair point, but I'm that convinced it is that if I'm proved wrong I will donate £100 to the MS Society.

On a hugely positive note, I woke up this morning bright eyed and bushy tailed.  I feel like my normal self again for the first time in nearly 3 months, so I think I'm coming out of the other end of whatever this turns out to be.  I read that MS relapses tend to last anywhere between a few weeks and a number of months.

So what am I doing with all of this renewed energy, I hear you ask??  I'm currently in the middle of a couple of loads of washing, cleaning the kitchen, tidying up and I will next tackle cleaning the bathroom and mopping the floors.  It's not been touched in 3 months and I'm sick of looking at the grime.  Rock and Roll!

Bear is taking me out tonight - we are going for dinner and the to see The Illusionists at the Hammersmith Apollo.  He's a good'un :)

Saying that - where has he got to?  He's not ducking out of his hoovering duties that easily!

Happy weekend everyone!

xxx

It's Electrifying!

Tomorrow I'm yet again visiting Charring Cross Hospital for more tests.  This time it is an NCS/EMG.  NCS is a Nerve Conduction Study, where tiny stimuli are applied to nerves in the upper and / or lower limbs and muscle responses are measured.  EMG study is where a needle electrode records muscle fibre activity.  I'm worried that because I've been taking 500mg Naproxen constantly for the last 2 weeks that the tests will be inconclusive.  I meant to stop taking it on Sunday but this throat infection has been so awfully painful, that the Naproxen and Codrydamol together have only just taken the edge off the pain.

It's a strange feeling because whilst I don't want them to find anything wrong, I also do!  I need to know that this isn't me just going mad.  If it is then what treatment is there for that?!  When Bear came home this evening he surprised me, he was actually glad that I was writing the blog.  His words were, "Well, I'm glad I've got something to read and understand you when you won't talk to me".  I thought he would be disappointed that I was sharing too much of our lives, but in reality I think he's happy if it keeps my mind off what the future could potentially hold.

My appointment is at 10:30am tomorrow and Bear has got a tablet from work to use whilst we are in the hospital.  We is in awe of it, and to be fair it's a pretty awesome one.  The first thing he shows me that it can do...? Paint....!  Me thinks that he should be cracking on with the marking up of some documents...... :)

I won't post again until I've been to the hospital and had all kinds of electrodes attached to me.  I suppose some people pay for the pleasure ;)

First Holiday of the Year!

My last post left the story at the point of me taking some real time off work and receiving the brain scan results.  I felt exhausted to the point where it was impossible to look at the computer screen or read a book, my vision was so blurred.  During this time I started to experience new symptoms, like my eyes bouncing up and down and feeling like the room wouldn't keep still, random nausea that would send me running to the toilet to heave for ten minutes, buzzing in my legs which would last hours at a time and would also come and go intermittently, like there was someone holding a mobile telephone on vibrate against my left foot - but only near the outer toes!  How strange!

It seemed like there was a new symptom every day; dry and stinging eyes, a dry mouth (I was always having to lick my lips), neuropathic sharp pain in my legs, the need to urinate constantly, and the newest - difficulty swallowing.  I have had this for about the last three weeks but it has now left me with a throat infection - which I'm pretty sure has been due to a piece of food which I wasn't able to swallow properly getting stuck in my throat and causing infection.  MS can cause weakness of the throat and mouth muscles.

On Saturday 28th September I went on holiday to Greece.  Bear and I had paid over 1.5k for this holiday, during which we would attend one of my close friend's wedding, so even though we were very close to calling it off, we went away under the pretence that I would be doing no different than if I was at home.  And the fact that it was All Inclusive meant that neither of us had to cook at all.  Happy days!  All in all I had mostly good days, although there were more moments of intermittent bad symptoms than I had suffered at any point earlier.  For example, the buzzing in my legs was constant 24 hours a day, my vision was so bad that I couldn't read my book for the first three days of my holiday, my balance was poor and my friends noticed it when i walked towards the buffet, and my speech was constantly slurred making my ftriends ask whether I had hit the margaritas before midday!

It's incredibly difficult to be socialble when it's hard to hear and subsequently understand people, especially when they are talking over one another.  When I'm having a bad day I find concentrating on even simple things difficult, like having a one-on-one conversation, but then put me in a situation where there are lots of people all talking at once and I just back away and I am quiet because I can't comprehend and respond fast enough to join in.  It's daunting and exhausting all at the same time.  This is why on the night of one of my closest friends wedding, at which I was a bridesmaid, I had to leave early.  My mouth wouldn't form the words that my brain was delayed in creating, and I was so exhausted that it wasn't enjoyable for me or anyone else who was around me.  What were my options?  Sit there and outwardly appear hostile and difficult, refusing to take part in the entertainment because I'm "tired" - there becomes a point where people get fed up of you using that as a reason no matter how true it is - or to retire, even if it involves leaving people bereft because I'm not there to join in.  At the end of the day, it is difficult for friends to watch a loved one act so unlike they usually do.  Normally I'm the life and soul of the party but these days I'm the first to call it a night, mentally putting my pyjamas on, the milk bottles on the doorstep and climbing in to bed by 10pm.

The Story So Far - Part Three: Puzzle Pieces

Puzzle Pieces

Bear had the day off when I went to the Doctors to get my brain scan results, so he came with me.  She informed me that there was good news and there was bad news.  The good news was that the brain scan results had been faxed over.  The bad news was that they were abnormal.  The scan report says:

"There is modest focus of abnormal signal in the right corona radiata which extends towards the ventricular margin.  There are two equivocal adjacent foci of signal change.  There is no restricted diffusion.

There are no definite callosal, temporal stem or areas of infratentorial signal change.

Whilst the appearances are nonspecific they do raise the possibility of demyelination"

The Doctor told me that this meant there was no brain tumour, which caused Bear and I a sigh of relief.  But she did think that this almost certainly indicated towards Multiple Sclerosis.  She wanted to write to the Neurologist and request that he see me quicker considering the impact on my life that this was having, especially on my work situation.  I wouldn't be able to bear it if I lost my job.  She also suggested that I have a lumbar puncture.  I asked how long this would all take to get a diagnosis and to start on treatment, but the only thing she could suggest (aside from writing to hurry things along) was to call the Neurologist's secretary and ask how much it would cost to go private.  I think it's sickening that if I don't want to wait two months to find out what is going on with my BRAIN that i have to pay for the privilege.  The amount that i pay in tax and NI every single month could cover my rent but still, if I don't want to spend two months in agony, debilitation or a state of worry - I have to pay.

At this point, I hadn't really thought about MS in too much detail.  I didn't really know what was involved and I certainly didn't know the myriad of symptoms that one could experience, as I do now!  Bear and I went away dazed, upset and confused.  I had the rest of the week off sick and used the time to research MS whenever I felt well enough.  I read about the symptoms, about the early symptoms that many people experience tens of years before it gets to a point where they are diagnosed.  I read stories and blogs of those who had experienced symptoms many times before their diagnosis but never correlated them to any significant lack of well-being until they were diagnosed with MS.

So it got me thinking about all of the ailments that I had been experiencing over the last ten years.

• I had suffered from an eating disorder from late 2004 until 2009 and have been in recovery ever since.  I don't know how much stress this put on my immune system but I only started my journey to recovery because my Doctor threatened to put me in a feeding clinic if I didn't start to put on weight (I'm 5ft 10ins and now weight 13 stone - back then I weight 9 stone, so you can imagine why he said that!).

• I had treatment for, what I believe was an incorrect diagnosis, depression in 2010.  I worked in Recruitment for a leading agency, which in all fairness was a stressful job but I was doing well.  My symptoms were physical more than mental - my legs felt heavy, my balance was poor, my heartbeat was very pronounced and the beating of it kept me awake at night, my speech was slurred and I couldn't concentrate properly.  Sound familiar anyone?!  My 'depression' was diagnosed not by a GP, nurse or Consultant, but by an Occupational Health Assessor employed by the company.  Given that I worked in an industry were 1 in 5 employees suffered from depression, you can hardly blame the girl for coming to that conclusion!  I was also in an unhappy relationship so natually I accepted the diagnosis, the subsequent anti-depressants from the GP and the time off work to recuperate.  I took exactly 4 weeks off work, but unfortunately didn't rest or rehabilitate.  I was unhappy, so I drank.  A lot.  I thought that I was inadequate and an idiot.  I beat myself up for not being happy.  I hated that my unhappiness was stopping my body from working, and I felt like a failure.  Eventually after a few weeks back at work, I had a breakdown and my mum came to collect me and took me home with her.  I believe that if I had had more tests at this point, instead of a flippant diagnosis of depression (lest not forget that a symptom of MS is mood swings/depression!) I would have not got to this point mentally.

•  Just after moving in with Bear I started getting very bad lower left hand side pelvic pain, which after an ultrasound scan showed up a very small amount of endometrosis.  But looking back I can remember a number of MS symptoms as well, the heavy legs, the fatigue and confusion, the struggling with breathing.  I had surgery which included a week off work to recuperate, after which I was feeling as good as new!

•  About a year after moving in with Bear (mid 2012) and getting a fantastic job in Birmingham, I started to feel like I couldn't breathe properly - like someone was hugging me really really tightly and I couldn't take a deep breath.  The only time I could breathe deeply was if I yawned!!  It affected me so much that half way through a Body Pump class at the gym I had to run out and struggled to breathe.  This had never happened before and I was regularly running long distance, so I wasn't unfit!  I had ran a half marathon 4 months prior for crying out loud!  OK yes, I smoked, but no more than 7 a day.  My GP took lung pressure readings and they were a bit low so she gave me an inhaler and diagnosed asthma for the time being.  She also sent me for a chest x-ray, which happened to be the same day, and the results of which were all clear.  I used the inhaler about twice over the following few months and the feeling just faded away in time.  I put it down to getting old!

•  Around the same time I had started experiencing pain in my left shoulder/neck area which made it feel really tight, like i had lifted a really heavy weight incorrectly.  I was very active at this point, going to the gym every day, but I hardly lifted weights I mostly did cardio, so this didn't figure.  I did think that it could be related to years of sleeping on my front with my forearms and hands tucked up under my pillow.  I ignored it putting it down to old age until on Christmas morning of 2011, of all days, it spasmed in the shower.  I spent the ENTIRE Christmas week walking like Quasimodo and in agony.  I went to see a Physio who diagnosed a lack of fluid between my spinal discs.  I have NEVER been so embarrassed though - I had booked the appointment that day (it was coincidence that he had an appointment free as later I heard that he was one of the best in the country!) - as I had turned up in my work clothes underneath which I had not only laddered tights but the most frumpy ugly underwear you could ever imagine!  And he made me strip down to my underwear.  Oh yea, and my feet whiffed when I took my shoes off - MORTIFYING!  In all seriousness, the neck stiffness and occasional spasms have continued to bug me on and off since.  I've not been brave enough to go back to a physio but I have found that a strong anti-inflammatory works wonders :) 

• For as long as I can remember I have had shooting pains going up and down my legs, but more so over the last three years.  It feel like someone has poked me with a cattle prod and it is isolated to when I'm sitting or lying down.  It rarely happens when I'm standing up.  I asked Bear a couple of days ago, "Are you sure you have NEVER had these feelings?", I was SURE that everyone experienced them, that it was normal.  He categorically said 'NO'!

• I have a number of times, I would say six outside of the 'depressive' episode noted above, experienced sudden and debilitating periods of extreme fatigue.  Where one minute I have been chatting away and enthusiastic and then the next I am like a rag-doll and unable to move.  Bear has witnessed these more than anyone else that I have been in a relationship with (the last 3.5 years) and he has admitted that on occasions he has got scared.  When it happens I can barely respond, and they can last from anything between a couple of minutes to a couple of hours.  My breathing goes shallow, my heartbeat become very faint, I can't open my eyes, speak or move my head and I just want to sleep.

All of the above are like puzzle pieces to me, pieces which fit in to the larger picture of MS.  Along with the immeasurable amount of colds, flu, chest infections, urine infections and the general lethargy they all amounted in the feeling that I wasn't quite cut out for life.  The slightest social event would leave me exhausted and a hangover would last two days at least!  I felt like an old woman before my time, not a 29 year old with an active social and work life.  Bear would comment, "I've never known anyone to physically struggle with life as much as you do".  I would grudgingly agree with him, hating myself for not being able to juggle life as perfectly as I could in my ideals.

The Story So Far - Part Two: No Man's Land

No Man's Land

After being discharged from Hospital on the Sunday I came back home with Bear for complete relaxation and recuperation.  The Consultant advised that I should take sick leave from work for at least the beginning of the week, which, for a change, I listened to!  Bear was great; fetching me cups of tea and making dinner, even though he had to go to work himself!  During this period the only symptoms I was having were problems with vision (everything was easily blurred and I had to really concentrate to focus, however putting my glasses on helped quite a bit), my balance was poor and my walking was very slow and deliberate.  I had to really concentrate on putting one foot in front of the other and I felt like my legs didn't belong to me - like I couldn't tell how much weight or pressure I was putting on them so I had to be careful.  The tingling that I had experienced earlier when in the hospital had started to ebb away and my concentration and mood were significantly improved.

By Thursday I was gagging to go back to work and have some semblance of normality in my life.  At work my colleagues were understanding and concerned, and I was open and honest about what was happening.  Although to be fair, I didn't really know what was happening myself - just that something wasn't right and there would be further investigations.  I have a great rapport with my senior colleagues and peers at work, I do my job well, and although I think some of them were guilty of thinking bad of me for taking such a large amount of time off, I think they understood when they saw me at work that Thursday and Friday that this wasn't a minor illness or over-exaggeration.  My boss, unbeknown to him that I had even been in hospital over the weekend, exclaimed loudly whilst I walked to the printer, "Is this the World's slowest walking competition?"  I saw the funny side, how could I not?  But I just couldn't walk any faster.  I shook when I got the milk out of the fridge to make a cup of coffee, I was holding on to desks as I walked by for balance, I had to squint at the computer screen (even with my glasses on) to see what I was typing, I couldn't hold my pen properly to write, my speech was slurred to the point where someone asked in a meeting if I had been drinking at lunchtime.  I found typing whilst listening to someone explain how a specific portion of code flowed through the system impossible.  This was the most worrying thing for me.  I'm constantly doing three things, never mind TWO, at once - I can't just watch TV, I have to be playing a card game on my iPod whilst also texting friends and flicking through a magazine.  I PRIDE myself on my ability to do two things at once - I did it at work ALL of the time.  So why did it sound like the person sitting next to me was speaking Vulcan whilst I was knocking out the simplest of requests by email?

I found that relaxing would temporarily take my symptoms away, and one minute I felt almost back to normal again and so would do something like clean the bathroom with a surge of energy, only to get half way through and collapse in a heap on the sofa unable to move.  Despite this my spirits were positive and I was sure that it was all still a big fuss about nothing still.  I wouldn't have been surprised if my GP or a consultant had suggested that I was just stressed and needed some time out - besides I hadn't had any proper time off from work since December 2012!

On the 17th September I had a brain scan, which I found out about purely by coincidence!  That day I had woken up feeling like someone had repeatedly been hitting me all over my body.  My skin felt bruised, my legs were so weak that even walking to the toilet was difficult, I had an awful headache and I couldn't see properly.  This was the first time that I experienced real vertigo.  Everything seemed unreal, like I was existing in a bubble and it just wouldn't stop moving!  All sounds were muffled and my brain wasn't registering what I was seeing straight away - there seemed to be a slight delay.  I had taken Valium before whilst admitted to hospital in 2011 for a severe panic attack and I felt similar.  Needless to say, I called work to explain and they were thankfully understanding.  Half an hour later I received a call from the Imaging Department at Charring Cross hospital to say that my appointment for a brain scan that day would have to be cancelled as the MRI hadn't switched on properly.  This was the first that I had heard about any brain scan!! I had received no letters, phone calls or emails!  The radiologist, although sympathetic and most probably not very surprised at the lack contact, said that if they had to re-arrange they would try and make it ASAP and before I went on holiday.  Deflated and angry at the obvious failings in NHS administration I expected not to receive a further appointment for months BUT the Radiologist called back and said that the MRI machine was now working and if I could still make it today that would be great! :)  I wasn't really in any state to go anywhere and the thought of getting on the tube from Ealing to Hammersmith made me want to cry, but I did it and I got there (with a very large Costa Coffee caramel latte in hand!).

Some people find MRIs scary.  I don't often get the opportunity to lie down and think of nothing (certainly not without feeling guilty about it!) so for me, being enclosed in a coffin like environment and having loud noises radiated through my ears didn't bother me in the slightest!  The concerned face of the Radiologist when she asked me if I had an appointment to see the Neurologist urgently did, though.  She knew something and when asked if she spotted anything told me that it would have to be confirmed by a Neurologist.  I was still hanging on so desperately to the hope that I would be shooed away and told to shake myself off and get on with it because it was just a little dose of stress.  But at that moment, I knew it wasn't.  I knew that the organ upon which I relied so heavily to make me ME had let me down in some way or another.  It hit me that I wasn't making it all up (irrationally I think we all worry that we are doing this, whether it's narcissism or self-preservation, I don't know) and then I started to get scared.  Surely she would have told me that 'everything looked OK and not to worry' if it had all been fine?  I decided that I needed to take action and be in control of something, so I went to the Outpatients Appointment department to check if I had any other tests or appointments booked in without my knowledge!  I did! Neurology Outpatients appointment on the 19th NOVEMBER!!!  But that was two months away!  Surely that wasn't right?  Didn't they know that there was something wrong with my brain?!?!  It takes a while to become rational in these situations and realise that:

a)  There might not actually be anything wrong - a worried Radiologist's face does not a tumour make;

b)  That there are probably thousands of people in the same boat - I'm no more special.

I struggled through the Friday at work and relished a weekend of relaxation and no plans.  The weekend came and went and although I managed to go to Ikea with Bear and pick up a few home furnishings I didn't get overly tired, mostly probably because I insisted that we sit down and drink coffee every hour or so!  On Monday, however, around 11am at work, the fatigue hit me like a punch in face, torso and legs all at the same time.  My brain swam and my eyes dilated.  I couldn't concentrate on what people were saying in meetings, I just stared in to space willing myself to concentrate and understand.  I felt humiliated and just glad that we didn't have clients with us that day.  I couldn't go on like this so I called my managers in to a meeting and explained how I felt and admitted that I was struggling.  they admitted that they could see that i was too.  We decided that it was time for me to take some time out and to use the time to try and find some answers from the Consultants.

That afternoon I called my GP who suggested that I see her the next morning where she could take some more bloods and she would try and chase up my brain scan results.  For the first time that all of this had been going on, I sobbed down the phone to her and I think she recognised my utter desperation and confusion.  I just wanted my life to go back to normal - why was this happening?!

At the time the waiting for results seemed worse than actually having the results - but I think this is only when you are still clutching to the naive insistent hope that you are going to be told that it's 'just stress'.

The Story So Far - Part One: The Beginning

The Beginning

Firstly - welcome to my blog! :) If you are reading this then probably:

a) You stumbled across it when searching for MS Blogs.  You have MS or you are a relative of someone with MS and want to more about how the disease affects all involved.

b) You are my boyfriend who wants to know more about what is going on in my head because I won't talk to him about it!

c) You are my parents who want to know more about what is going on in my head because I won't talk to them about it!

d)  You are my friends who want to know.......  you get the drift...!

e)  This one is a long shot:  I have been nominated as best 'Blog of the Year' and you want to send me on an All Inclusive holiday to Mauritius as a well done.  Yeah, I will keep dreaming about that one....

On  26th August 2013, Bank Holiday Monday, it was a glorious day (for a change in the UK!).  Bear and I woke early and decided to go for a walk in the sunshine to a local village for some breakfast, which was delightful until we started to walk back.  Fatigue, weakness, imbalance, a blinding crashing headache and sensitivity to the sunlight hit me like a brick wall within 2 minutes of leaving the cafe.  I had absolutely no idea what was wrong but I suspected that it was hayfever or I was coming down with the flu.  The 1.5 mile walk home was difficult and I spent the rest of the day and night in bed, moving only to use the toilet and to try to eat something (unsuccessful!).  The next day I woke up feeling only slightly refreshed after the day in bed but able to shower and go to work, but within 3 hours of being at work the debilitating weakness and tiredness had hit me again.  I felt like my legs were made of lead weights and I could barely hold my head up.  My speech was slurred and I couldn't think or see properly.  I was sent home from work for more rest and I made a doctors appointment for the next day.  I slept all day but again it did little to relieve the utter exhaustion.

I had originally booked to see my GP on the Friday of that week to discuss my lower back pain, which had been nagging for 2 years on and off but had been a constant deep aching for a number of weeks.  She prescribed me some Naproxen 250mg twice daily (every 12 hours).  I then told her about the "funny turn" that I had on Monday and how it had left me in bed for two days, she took some blood and then asked about my obvious difficulty walking.  I told her that my legs felt like weights and that it was like walking through water.  She examined my reflexes and did some basic neurological tests before confirming that I had marked weakness in my left hand side, and that if I began to have any numbness in my legs that I should call her immediately.  I left with the Naproxen feeling a bit baffled by it all and thinking that it was all just a fuss about nothing; the last month or so had left me feeling exhausted - that was all. After all I had competed in the Virgin Active London Triathlon, gone to V Festival with Bear where we had spent pretty much three sold days getting pissed, and work had been crazy busy. I spent the rest of the afternoon and evening on the couch, hardly moving a muscle and insisted that I just needed a good holiday and some time out.

The next morning I woke up and felt remarkably better - the fatigue had lifted and headache had disappeared.  I was elated!  However my left leg just didn't feel like it belonged to me.  I had a constant buzzing feeling in it, it felt numb and my toes were so cold!  It was weak and caused me to walk like it was dragging behind me.  My balance was also very bad and I had to walk slowly to stop myself from falling over or walking in to people!  But I felt better so I didn't worry.  I managed to get in to work, and sat at my computer I felt fine and worked away happily.  My GP called me that afternoon to tell me that my bloods had been rushed through and there was no evidence of iron deficiency to explain the fatigue, but my white blood cell count, although still within the normal levels, was slightly elevated.  Upon asking about how my legs felt, I told her about the weakness, tingling and numbness, and she promptly told me to go to Charring Cross A&E to get an urgent lumbar spine MRI as she suspected Corda Equina.  I had no idea what that was and told her that I was fine, was at work so couldn't really get away, but I would wait and see if it got better on its own before making such a drastic decision to go to A&E.  It felt silly to walk in to A&E feeling relatively well apart from walking a bit funny and demanding an urgent MRI!  I could imagine the scathing stares of 'who the hell is she' already!

The next day she called again and asked if I had been to A&E yet, to which I replied no.  She reiterated her advice and explained what Corda Equina is and if it's found quickly then it can be treated within minimal complications.  If it is left then it could lead to paralysis.  Needless to say, this was enough to make me get my coat and explain to work that I needed to go and get an urgent scan of my spine.  Off I limped to Charring Cross A&E, where after a 36 hour wait I had a lumbar MRI and the Neurologist confirmed that there was nothing compressing my spinal cord.  Phew!  However I did have a dehydrated spine, something which the consultant sandwiched in to the conversation, somewhere between telling me that it wasn't Corda Equina and that it could be another neurological condition.  I don't even remember them saying anything about a 'dehydrated spine', it was Bear who picked it up and told me when we discussed it later that evening, I think we were both so stupefied by the idea that it could be Neurological that we didn't think to ask.  At the time I remember thinking, HOW can my brain have anything to do with me not being able to move my leg?!  Oh how naive I was!

I stayed in hospital from Friday until Sunday evening and had a number of neurological tests, including reflexes, pin-prick, coordination, balance and strength.  The consultant didn't give me any feedback on my performance in these tests but just muttered a 'good' after each one.  Steadily, after two whole days of lying in a hospital bed, my symptoms improved and I started to regain feeling and strength in my left leg.  On Sunday evening a Medical Consultant (not Neurologist) informed me that I could go home and that they would request a brain MRI and a NCS/EMG as an outpatient and then I would be seen in Neurology Outpatients.  They also sent some blood samples off to Serology to test for Weil's and Lyme Disease.  When I asked what they thought was wrong with me, they 'ummed' and 'ahhed' and just wouldn't give me a proper answer - it was so frustrating.  So we left the hospital none the wiser but just glad that I was starting to feel a bit better.