The Sword of Damocles

My initial reaction was mixed. Having progressed from the physical tests of cardiology whereby you can have sense of how the body is doing/feeling, waiting on the results of a brain scan is a different beast and plays on the mind. I had prepared myself for a more life threatening revelation, which would be difficult to overcome with the imminent arrival of a daughter.  I was somewhat consoled by my neurologist’s message that MS should not detract from living a long and fulfilling life.

With this is mind I left the neurologist’s office slightly optimistic. I phoned my wife and told her I had good and bad news – the good news was I had no tumours, no cancer and nothing that was life threatening. The bad news (although everything is relative) was that he thought I might have MS. She misheard me at first and thought I had said the neurologist didn’t think it was MS, so when I confirmed that he thought it was – I wasn’t prepared for her reaction. Extreme hysteria attacked me from the other end of the phone, my wife obviously knew more about the illness than I did. I was somewhat unprepared for this reaction given the neurologist had told me that this was not a life threatening illness but could expect mobility issues within the next three years.

That night whilst we both lay in bed unable to sleep, we started the research (research which still continues now). Whilst my wife looked for cures that didn’t exist, I started learning about the illness – what it actually is that causes the possible paralysis.

For those who like myself at the beginning knew very little about the nature of the illness, I hope to explain in simple terms with a basic description below, that I have taken from several research journals, books, articles etc on the illness.

The nerve endings in the body I will liken to an electrical wire (an Apple iPhone charger if you will). These nerve endings are protected by a sheath known as myelin, just as a phone charger is protected by plastic. In a person who has MS, the body’s immune system attacks the myelin sheath leaving the nerve endings exposed, just as a phone charger can start to fray (see below image). As with a phone charger, if there is damage to the protective coating it becomes temperamental and does not charge efficiently. In the body, when the myelin is damaged by the immune system, the nerves (live wires) are left with many scars (Multiple Sclerosis) or lesions and the signals sent through the nerves become impaired. Over time as these attacks continue, further damage is caused which affects the signals sent through the body, consequently resulting in the impairment or paralysis of anywhere the nerves reach, i.e. everywhere.

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Following a day or two of feeling low, the weekend arrived and we found optimism where there was cloud. The small amount of research we had done to that point had suggested that this was an illness which could be managed through lifestyle changes. With the uncertainty akin to the Sword of Damocles now above us we were resolute in making sure we appreciated every moment together.

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The Start of the Beginning

As a keen footballer, my passion of playing had taken me around the UK and even Europe. At my peak I was playing four times a week in addition to squash once a week and regular gym visits. 
 
I remember the moment when I ruptured my anterior cruciate ligament (ACL). It was during the summer of 2012, I had recently returned from an amazing honeymoon, safari-ing in Kenya and relaxing on a beach in Zanzibar reflecting with my soul mate about our wedding day and a lifetime of future adventures together.  
 
As I advanced up the pitch on a maurading run approaching the opposition goal, an innocuous tackle came in from my right, causing me to pivot and then the CRUNCH came, down on the ground – instant agony.  The pain soon eased and I was able to hobble along on my way.  A visit to the doctors and an MRI scan on my leg later revealed that it was my ACL which had been damaged and I would need surgery to reconstruct it. The recovery was to last for nine months and was told with focussed exercise I would not be able to tell which knee had been injured after a year or two. 
 
Looking back I can now remember the blurry vision manifesting itself after 30 mins or so of intense squash.  Indeed, squash is a good test of vision as any lapses in vision are soon rewarded by fresh air shots and the conceding of points.  At the time I put it down to dehydration. I wondered if it was down to my recent laser eye corrective surgery when the same thing started happening when playing football. A visit to my consultant at Moorfields eye hospital ruled this out and alas, with minimal cardio activity for the best part of nine months following surgery, there was little opportunity for my vision issues to present themselves.   
 
It was only when I came to the end of my rehab that I realised there was a problem. After almost passing out at a Bikram yoga session 20 minutes in (my body had always been resilient to heat) coupled with now blurry vision after only short cardio sessions, i decided to make a visit to my GP.  He sent me for a blood test which in the main came back ordinary but with a high level of cholesterol.  As the weeks went by I began to notice my vision getting worse, even a short walk to the local shops for lunch was enough to trigger an onset of bluriness. Raising my concerns once again to my GP – this still resulted in the same reassurances that I was ok and nothing was wrong.  
It was only when I shared these concerns with my physio that anything was done; and from then, things happened pretty speedily. Given the link with cardio exertion, I was referred to a cardiologist. I was put through several tests including wearing a heart monitor for 24 hours which had several wires connected to a pocket battery and memory card. I can remember feeling very uncomfortable wearing this on the public transport for fear of being mistaken for a terrorist. This test combined with an echo scan provided no insight into what was wrong with me.  It was only when I underwent a stress test, consisting of me running on a treadmill whilst rigged up to a heart monitor that my symptoms presented themselves. I can remember being glad at the time this was happening in front of someone that could bear witness to what was happening to me. The good news was that it wasn’t my heart and I was deemed to be in physically good shape – the bad news was that we were still non the wiser as to what was causing the problems in my vision. 
 
It was then I ended up sitting opposite the desk of a neurologist.  After recanting the events which had seen me land there, the neurologist performed a basic examination including testing my eye and limb reflexes.  He decided I would be sent in two directions, I would undergo some brain tests – an MRI scan and a visual evoked potential examination (VEP) and secondly a return to Moorfields eye hospital to rule out the onset of Glaucoma.  
 
I was well prepared for the MRI scan, having had one recently for my knee. This time involved going head first into the chamber which wasn’t as claustrophobic as I imagined.  The second brain test the VEP was like something that would not of been out of place in Stanley Krubric’s film A Clockwork Orange. 
 
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At the hospital not many of the staff seemed to know what a VEP test or where I was meant to go. Eventually I found the place and was ushered into a room, rigged with wires and made to stare at  black and white chequered screen. I have since found this informative guide which explains more about the test: http://www.ucl.ac.uk/cnp/Documents/VEP.pdf
 
It was on the 27th of June 2013, (the day before I was scheduled to go into Moorfields eye hospital) that I met up again with my neurologist for the results of the brain tests. I remember waiting for over an hour from the scheduled time of the appointment when I was finally called in. BAM! The MRI scan had revealed there to be lesions on the brain, which together with my symptoms was consistent with a suspicion of multiple sclerosis.
 
 
 

Remember, Remember the Fifth of November

The fifth of November 2013 was the day my neurologist delivered the official diagnosis to me. It was one that I had already been prepared for many months before.

“Your test results are back and we now have enough evidence to officially diagnose you as suffering from demyelination (multiple sclerosis)”

For me this was not a sad day as this was also the day that my wife went into labour and the imminent arrival of our daughter was where my focus remained.  The news of having multiple sclerosis was not new, but the arrival of our daughter was. Indeed over that time I witnessed how amazing the human body is, I saw:

  •  My wife put herself through extreme pain without any pain relief ver a 52 hour labour process,
  •  My body, in spite of MS and it’s tiredness inducing tentacles, remain stoically alert throughout the duration,
  • The arrival of new life. A new person, whose demands of love and attention met with no resistance.

I have always read that everyone has a story to tell. I didn’t imagine mine would be this… but armed with plenty of cliches I will try and map out my thoughts, feelings and aspirations, as I embark on my journey with MS.