Tuesday, 15 February 2011

Where it all starts

 My story starts back in October 2005 when I developed problems with my balance, it felt like my head would be swaying inside rather then dizzy and is as if I was walking on cotton wool. The GP thought I may have labyrinthitis and gave me some a medication called stemetil to deal with what he thought was dizziness but it didn't help.  After about a week I thought I was feeling better so I returned to work and but I still kept getting this sensation like I was walking on cotton wool and plodding. I then felt like at times my speech wasn't right, at times I felt like I just couldn't form the words I wanted to say. Initially I thought I was imagining it but then it became more and more noticeable and my walking got worse and at times I was quite unbalanced and wobbly on my feet. When my manager at the time observed this she actually sent me home sick again.

As you can imagine, more so because of my speech issues I was really quite worried and anxious and to add to it I developed numbness and pins and needles in my right arm.. I saw my GP who didn't have a clue what was going on with me (or at least that's what he said), so I was referred to a neurologist.  I was a very lucky girlie because at the time I was working in a hospital in London and my manager also managed Neurology Outpatients so I got my appointment pretty damn quick.

When I saw the Neurology registrar, he felt my symptoms were suggestive of brainstem demyelination. But reassured me I should start to recover over the next few weeks but referred me for a lumbar puncture, MRI and visual and somatosensory potentials (VEP and SSEP, for information on these and the other tests look at my linked pages, MS information) He was being optimistic with his 'better in a few weeks' as in reality it took another 3 months to feel better.

Again I was a lucky girlie and my connections (this time Doctors that were friends) made sure my wait for my MRI wasn't too long. I had my follow up appointment booked for all my results but unfortunately I am a very inpatient person and even more unfortunately I could access my own scan results. So whilst  I was at work (I'd gone back to work after a couple of weeks) I decided to be really clever and look at them. I really didn't expect  that anything would be wrong with my scan so  you could imagine the gut wrenching shock I got when I saw the words "multiple foci of altered signal intensity.........many of the lesions............The appearances would support a clinical diagnosis of MULTIPLE SCLEROSIS" WTF?????????????  Did my scan really say that it would support a clinical diagnosis of MS!!!!!!!!!!!!!!!!!! At this point I was on the verge of a major panic attack, literally. I called my then boyfriend (he is hubby now) and he  managed to calm me down a bit, well, enough so I could call my manager anyway.  I confessed what I'd done and showed her my scan.  She was fantastic and went straight round to the Neuro department and got me in to see the consultant!  He then explained to me that yes I had multiple lesions in my brain but as this was my first episode of symptoms he would not call it MS and tried to give me lots of reassurance.

Somehow I got though the day and once I finished work called up a good friend of mine. I told her my scan results and she then blurted out to me that she has been so upset and panicking because she had already seen the results (I had asked her to do this for me but presumed she hadn't had a chance to check them yet). She went on to explain that she had checked the previous night whilst on her night shift and had spent the best part of it crying and planning how she and the rest of my mates were going to help me.  Bless her, she's a fantastic friend.

When I saw the consultant in the New Year he explained in greater detail what all my results meant and diagnosed me with Clinically Isolated Syndrome and explained that if I had any further episodes of symptoms he would then class this as MS. Woo Hoo, joy of joys you can imagine how s*** I was feeling.  Over the next few months my symptoms did disappear and I eventually got back to normal (well as normal as I ever was). He was seeing me every six months but after a year I asked to be discharged because I felt that knowing every six months I was seeing him I couldn't really forget  about things and move on with my life.

So eventually I did managed (well kind of ) to forget about this possible diagnosis of MS in the future and I prayed, hoped wished that, that day would never come...

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