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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? 

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