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There and back again

11 July 2015

In my introductory post, I alluded to the series of challenges I faced over the many months it took to reach a definite diagnosis of MS. I am following that up in this post by providing an overview of my perceptions of this journey. During, a recent re-viewing of the most mammoth of all movie marathons, the LOTR trilogy, I became aware that the route I took to get to the diagnosis of MS was not unlike Frodo’s: of seemingly epic duration, involving all sorts of bizarre entities and with enduring effects on my psyche. That being said, it was not without some silver linings, and the whole ordeal was definitely made bearable by some very good friends. (Note: another reason this is a particularly appropriate comparison is that, given my height of 152 cm, I would fit right in as an extra in Hobbiton.)

If you allow me to explore the analogy further, just like Frodo, I feel like I was leading a very comfortable and sheltered existence (pre-MS), until suddenly I found myself embarking on a perilous expedition with no clear sense of direction or control. In the first instalment, after some highly unusual events (first clinical attack), it was suggested that an initial exploratory trip should be made (MRI #1) to see Elrond (a radiologist). The purpose of this expedition was allegedly that of providing answers, but the unexpected outcome was that of a much longer journey being proposed (additional MRIs and lumbar puncture), which was going to take place over months or even years. While coming to terms with this, it was at this stage that I got interrogated by a rather terrifying Galadriel (GP#1 who tried to pin all my symptoms on one of several mental health disorders). However, on the plus side, I did make a useful ally, Aragorn (a psychologist) who stuck up for me. Thankfully, I also had a family member, Bilbo (neurologist #1 and my brother-in-law in the USA) who gave me some useful advice, but unfortunately he then disappeared out of the scene for quite some time (as it happens, he was deployed to Afghanistan).  A wise old wizard, Gandalf (GP#2) played a crucial role in setting me off on the right path, but I rapidly and distressingly found myself pitted against a number of seemingly shadowy forces (a series of challenging appointments with a wide variety of medical specialists).

Firstly, there was Saruman (neurologist #2) who I had hoped would be an ally, but unfortunately he did not choose to be on my side. After one encounter, I avoided coming face to face with him again at all costs. Boromir (neurologist #3) was at least on the right team to start with, but as time elapsed, it became apparent that we could no longer journey together any more. Things then really started to go wrong. The initial group of fellow travellers dwindled to just me and Sam (played by my husband) who didn’t quite know what was going on, or where we were headed. He was however most helpful in being my constant companion and providing moral support, despite me intermittently being driven almost to insanity by the whole process. It was at first hard to tell where Faramir’s (neurologist #4) allegiance lay, but he did eventually end up being on my team – it was simply unfortunate that he was located elsewhere when I was most in need of assistance. A fair bit of time passed with us wandering around (aka “being in limbo”) and getting increasingly fatigued. Then there was another upheaval (second clinical attack) although it was camouflaged by the war raging around us (multiple other medical issues). Eventually, I encountered the biggest challenger of all (neurologist #5) and got mercilessly stung, which required Sam to stage a heroic rescue using a secret weapon (in this case, knowledge) provided by good old Bilbo. Somehow, we survived and pushed through to the complete the journey by throwing the ring into Mt Doom (a diagnosis of clinically definite MS was reached). However, it was all done in a rather troubled anti-climactic way decidedly lacking in composure and confidence.

Life After Diagnosis

Following this, things settled down, and I was reunited with my friends. However, for a while my life seemed hollow and while these friendships had been strengthened, there were many aspects of the journey I found difficult to explain. Eventually I accepted I must embark on a ship to a new place (life after diagnosis) leaving behind the familiar comfort of Middle Earth (my previous life). All that was missing was Peter Jackson directing, an elf & dwarf duo to provide comic relief and a CGI character with a lot of phlegm and with terrible posture.

What about you, my wonderful readers? Does this resonate with any medical encounters you have experienced? Is there a movie plot that parallels your journey to a diagnosis?

Comments (20)

Oh my goodness! Although you've not given us the blow by blow details, it sounds as if you went through an epic nightmare to reqch a diagnosis! I'm pleased you at least had a good team supporting you through it all. Looking forward to hearing more about how you are learning to live with the diagnosis you finally "achieved"!

I could write a thesis on this! (Or bend your ear for a very long time). Weird the notion that the diagnosis was an 'achievement', but by the end, I just wanted the journey in limbo-land to finally end and to get access to treatment.

Wow! What a convoluted journey to diagnosis. Seems lots of people with MS have a similar kind of long winded journey, mine included. Looking forward to your next blog.

An epic journey indeed! I can so identify with some of those characters, and may have met them along the road as well. Glad to hear you had your Sam and Bilbo in your life to offer you the support when the battle got hard. Looking forward to reading more. :-)

It's amazing the cast of characters that can be involved in an MS diagnosis, isn't it! They all play their role in setting the scene and shaping the overall outcome.

Nice analogy Sarah. I SHIRE hope you will be TOLKIEN in a bit more detail about what happened though!

Well, my dream would be to have a website/blog for people affected by progressive forms of MS, because we have a slightly different view of all things MS, and I think the progressive forms of the disease may hold the key to understanding the whole puzzle of MS, but we shall see...

I suspected that might be the case Lawrie! And I can't wait to see what you craft up, because I love your humour and story-telling ability. I can imagine life from a progressive viewpoint is quite different - maybe like the difference between being on the front-line in an active warzone (constant issues) versus simply living in a politically unstable hotspot (intermittent and unpredictable problems). Neither of which are good, but one is worse than the other. Let us know when that project gains wings.

Wow!! That's one hell of an adventure!! Makes mine feel so uneventful in comparison - and yet I absolutely understand the efforts you've gone through just to get an answer!! I love the LOTR/Hobbit analogy. Brilliant!!

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