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Welcome To Your Diagnosis

13 July 2015

My diagnosis didn’t come quickly! It took just over twelve months, three relapses, three MRI’s, one lumbar puncture, two neurologists, one urologist, one physiotherapist and a speech therapist, before it was confirmed. In amongst that was the most stressful traumatic year in my life. I lived in limbo of ‘what if’ and the ‘do I’ for twelve long months. During that time my symptoms ranged from nerve pain, intolerable itchiness, unbearable fatigue, incontinence, memory issues, muscle spasms just to name a few. The hits kept coming and just when I thought I had recovered I was hit again. To the outside world I looked the perceived normal, while on the inside I couldn’t quite work out how I felt.

Funny thing about limbo, sometimes it can affect only one part of your life. Although we were in limbo in regards to my possible Multiple Sclerosis, we forged ahead in other areas of our life while we waited it out. Yes the world kept turning, while a little piece of me stopped. Even though life kept moving, that little piece of limbo was ever present in my mind, and I knew one day it would catch up and crash back to life!

It would be fair to say that by the time I received my diagnosis, I had been eased into the idea that I had Multiple Sclerosis so when the time came and my husband and I sat in the neurologist office, it was like a scene out of a movie. It was surreal even though I knew I was living it, though I had become so used to being told still nothing and to go and live my life, this time was different. He had to call for the results of the MRI scan, the radiologist read the report over the phone to him, my neurologist sounded surprised, though a good surprised, like he had heard something he wanted to hear. Hanging up the phone he turned to me and said, ‘they have found a prominent lesion on the ponds, which is part of the brain that coincides directly with your sensory symptoms. I can now say you have MS! It was said in pleasant unassuming tone. Almost like he was telling me something I already knew. ‘Welcome to your diagnosis, please fasten your seatbelt as we are expecting turbulence for the rest of your life, we hope you enjoy your journey with Multiple Sclerosis airlines.’

After a moment the reality kicked in, I took a deep breath and looked at him and asked ‘so this isn’t a case of I come to you next time and you say, let’s do another MRI to double check you really do have MS.’ His words resonated with me. ‘No Amber, when I saw you in March at the hospital I was 80% sure you had MS, now sitting here I am 95% sure. Amber you have MS. I asked him where my balloons and streamers were, at this he laughed.

It’s almost six years since that conversation. A lot has changed for me personally, though I am still a daily passenger on MS Airlines. Wouldn’t it be nice if you received frequent flyer points, and the reward after being a long-standing member was a cure! The trips are as chaotic and unpredictable as ever, service unreliable and I am yet to receive my complimentary glass of champagne. However the difference now is I have come to expect the misadventures that come with travelling through life with this unwanted companion.

How long did it take you get diagnosis? Was it long winded, or did it happen quickly? 

Comments (55)

"Welcome to your diagnosis, please fasten your seatbelts" . You couldn't be more accurate in this depiction of life with MS? Wonderful blog. Thankyou for making my day. :)

Thanks Rebecca. :-) I have met some amazing passengers on MS Airlines I am in good company. Its just a shame thats how we have all met. Would be much more pleasant if we were headed somewhere exotic.

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'Only' one year! Seems strange to think you are possibly one of the 'lucky' ones! Thanks for highlighting some of the difficulties around diagnosis Amber. I look forward to your next post, and I hope you get lots of comments from other people affected by MS that share how difficult it was for them to get a diagnosis, and suggestions which can point us towards a more person-focused approach to diagnosis in the future.

Thanks Lawrie. :-) In all honesty it wasn't until I started writing this post, that I really thought about the process I went through to finally reach that fateful day. I also hope others feel they can share via comments their own experience, so anyone who happens upon my post can relate further.

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Ah, the joys of a "diagnosis of exclusion". Love the bit about turbulence - oh so true! I also had enough MRIs in one year that the kitchen cutlery stuck to me. You almost want to say to the neurologist, "are we there yet?" because it does get to where everything is suggestive of MS, but the line in the sand seems variable in terms of when someone calls it.

Thanks Sarah. For me, the neurologist had ruled out other possibilities after the first visit. He knew that it was high probability to be MS though I didn't fit into the diagnostic criteria to call it what it was. The ticking of boxes is so important, as there are many people with MS like conditions, though its frustrating just the same. :-)

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A great read, and interesting to read how long a diagnosis took people to get. I guess I was quite lucky- there was only a month or two of uncertainty around "it may be this or that" and I was on medication within 4 months of my initial relapse. While nothing is ever perfect, I'm so grateful to live in a country with such a great health care system and professionals.

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