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 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.