In 2002, I was involved in a car accident where someone drove into the back of me. For the next week, I had a painful neck and back. I had to twist my entire body just to show my boss I was actively listening to whatever they deemed to be vitally important. However, I also experienced a strange tingling in my right thumb and forefinger, which progressed to complete numbness. "Not to worry," I thought, putting it all down to the accident. After a few months, I was back to playing badminton, hitting the gym, and generally treating my body like a temple ;).
Fast forward to January 12th, 2006—fear not, dear reader, for the gap in time shall be filled, but this is being written by someone with issues with sequencing—when I heard the news that changed my life. By 'changed,' I mean that a diagnosis of MS tends to make a person as stable as a two-legged tripod, making the simplest of journeys fraught with danger.
I was on a bed in a GP Assessment Unit (GPAU) at a local hospital, trying to ignore the background noise. I was about to tuck into a meal of bangers and mash (well, that's what they told me it was) when three ladies circled my bed and drew the curtains. With hindsight, I should have realised this was the prelude to bad news and not a test of pure polyester privacy.
Faced with two nurses and one doctor, the only thing I could think was that they were interrupting my meal. I was hungry and wanted to excavate the grey sausages before consumption. In a slightly hushed voice, the doctor started to explain the results of my MRI scan, breaking up words I understood ("the," "is") with "transverse myelitis" and "demyelinating plaque." I started thinking, "OK, how do we get this myelin back so I can crack on with my dinner?"
Then the words hit me: "and 75% of the time this goes on to be diagnosed as Multiple Sclerosis." Ooooh, cliffhanger! Now you have my attention, Doctor.
Now, in the style of Columbo, where you already know the result, I shall stumble my way back to the origins of how I ended up with that sad-looking plate of food. Remember the car crash? The effects of that are what we’re going back to.
It was late October 2005, and what I thought were the effects of the accident were still returning, so I arranged an appointment with a specialist at a private hospital in Manchester. I had private healthcare from my job. By the time of the appointment in early November, I had new, strange symptoms in addition to the back pain and hand numbness. I also had an odd but strangely intriguing sensation running along the inner thigh of my left leg—numb, but when investigated, it gave the same feeling you get when someone runs their hand up your back (or neck, depending on what you’re into).
Before my appointment, the hospital sent a form to detail my symptoms. It included two blank diagrams of a generic human body. Following a key (Pain - X, Numbness - //, Altered sensations - #), I had to mark where I was feeling discomfort. Upon completing my diagrams—which I can only liken to the creativity a toddler shows when let loose with a pen—I looked at them and thought, "I can't be experiencing all this, can I?" I sent the paperwork back as it was.
The day of the appointment came. After the examination, I was sent for an MRI. The difference between private and the NHS? For my private MRI, I was offered a choice of music. Because I’m a funny bugger, I chose 'The Sound of Silence' by Simon and Garfunkel.
At the end of November, I sat in front of the consultant again. No name will be given, even though it is burned so deeply into my memory that even MS can’t erase it, because he was (and most likely still is) a total ass.
What he went on to say crushed me.
He concluded that I was making my entire experience up. I had built up a mental barrier that wasn't allowing me to get past my "phantom pain." The highly-paid private doctor recommended a course called "Human Focus" and explained that for £5,000, I could overcome this "vicious cycle of worrying."
Stunned and exasperated, I pleaded, "So why can't I feel my hands then?" I raised them, palms up, in front of my face. With a casual wave of his own fully functioning, non-afflicted hand, he matter-of-factly dismissed me: "Go on the course." Consultation over.
This had a massive impact. I sat in the car park and burst into tears. These things I was experiencing mustn't be real; a doctor had told me they weren't. Nobody expects doctors to be perfect, but they are at least expected to listen. My symptoms were clubbed together, and the diagnosis was that I was wasting his time.
As I sat there, I thought about how certain I had been that something was wrong, only to find myself in a minority of one. If this was his definition of a 'vicious cycle of worrying,' I was, at that moment, fucking worried. Worried that I was going mad and that my belief was so entrenched I was making these things happen to me. Even though the car park was full, I felt lost. I still couldn’t feel my hands, and when I touched my leg, there were patches of numbness. I cursed the fact that I couldn’t feel them properly.
I called the office and took the rest of the day off, deflated that everything was supposedly in my head. I drove home, convinced it was down to me to quell that shit, put it in a box, and move on. There’s nothing wrong.
I embraced this attitude and decided to quit my current job and join a new startup. This meant I was placed on 'garden leave' for the month of December. For the remainder of the month, my symptoms didn’t get worse and actually started to improve. This led me to believe the doctor might have been right after all. Perhaps I should just pull up my big boy pants and get on with things. Besides, I now had all of December to myself—an early Christmas present!
Baltimore was interesting as it was in the midst of a "Wintrery mix" as the meteoralogical reports kept telling me. When rain is coming, do they call it a 'Precipitation situation'? As a point of note, the battle for the best weather reporting by American TV networks was full on with each one trying to highlight how the radars they used were the most accurate. I preferred the Robin Williams guide from 'Good Morning Vietnam' when his character said, "You got a window? Open it."
A few days after getting to America, I woke up and my feet felt funny. It felt as though I had several pairs of socks on and when I walked there was a 'buzz' in my feet which felt a bit like a tuning fork. I didn't think anything of it and dismissed it as a reaction to the colder climate or an allergic reaction to my brother. I have mentioned that he's an Evertonian.
As the week went on, every morning was the same. Same feelings in my feet but now the tingling and numbness was starting to work its way up both calf muscles. I thought it was odd but it wasn't enough to make me that concerned about it - my brother felt this was too which I'll elaborate on, shortly.
I was also really tired. All the time. Every day.
It didn't matter how much sleep I'd had, I was still shattered during the day and no amount of nappage was doing anything to help. I'd also started to drop things and lose coordination in my hands and mid-way through my second week there, things were starting to concern me. It was at this moment that my brother uttered the now immortal words of advice, "Have a hot bath" which has caused some laughter amongst the family considering what was really going on. But...
This test has not been used for many years.
The hot bath test reflects the effect of heat that many people with MS notice. Hot weather, hot baths or showers, exercising or an infection can all raise your internal body temperature. The raised temperature can cause your MS symptoms to appear or worsen. This is known as Uhthoff's phenomenon. - www.MSTrust.org.uk
Who knew my brother was ahead of the game?
The following day, I took myself into the city to Johns Hopkins Hospital in a bid to find out what was going on. Tough crowd at that place. Before sticking me with the needle for a blood test, my nurse uttered, "Small prick" to which I said, "Ah, come on. The room's cold." Nothing. Not even an eye roll.
I believe that the doctor who I went onto see suspected what was going on and he gave me information on peripheral neuropathy for me to share with my doctor when I returned to the UK. Obviously, I went to Google first and typed the term in to the search box. The results which came back included, Sjogren's syndrome, lupus, rheumatoid arthritis, Guillain-Barre syndrome, chronic inflammatory demyelinating polyneuropathy and vasculitis. MS was in the returned results somewhere but I remember laughing at the possibility it could be any of the things mentioned. Besides, I was tired again and I could feel a nap coming on.
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