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