Go With The Flow.
Approximately August/September 2004, I was living in Balgownie with my then-boyfriend and two children. He was in Wollongong ICU because he’d embedded himself in the windscreen of someone’s car. That was not a smart thing for him to do, but I knew that he would wake up just fine. He spent 3 ½ weeks in a coma, and another 6 weeks in a rehabilitation facility to recover. My son was six and my daughter was two. At that time, I couldn’t drive. In this time I became familiar with the sights, smells, and sounds of hospital life.
While this was happening, I could see a big blue dot where someone’s face would fit. In fact, if I looked directly at someone, I couldn’t see their face at all. It was only the big blue spot. After a while I went to see my doctor about it, who sent me to have an MRI. I’d never had an MRI before, and didn’t know what it would be like, so had no idea what I was in for. Once it was done, I told the technician that it was like being at a Kraftwerk concert but with rhythm instead of music. He looked at me like I had five heads.
Well, the MRI showed a calcification that was ‘of no significance’, so I was sent to the local eye specialist in Figtree. After waiting for a long time in the waiting room for my appointment, I had a few tests and things and was told that there’s nothing wrong with my eyes. So, I then went to see someone at Southern Neurology for what I later found out was Visual Evoke Potential tests. Seems my left eye registered light slightly faster than my right eye, but that had nothing to do with the big blue spot that I could see, or the results of my MRI. Alrighty.
So the big blue spot remained a mystery, and eventually faded away. My then-boyfriend’s health issues were more important to me, so I thought little more of it after that. We married a couple of years later, on the 6th of June 2006.
Let’s fast forward to June 2013. I’d divorced that guy, and was living with my kids in Coniston. They son was fifteen and my daughter was eleven-years-old. For my birthday I turned off my phone, signed out of Facebook, and spent the day at a friend’s place. She was teaching herself how to tattoo, and I volunteered to be one of her practice subjects. By the time I left, my leg hurt but it was decorated with a reminder for me to “Go with the flow”. By the end of the week, I couldn’t feel my leg.
Since I’d had spinal surgery in March 2012 to replace the disc at C5/6, I ignored the loss of sensation in my leg for a little while. I’d already spent most of the last year with my legs in so much pain that I could barely walk. When my legs still felt a little numb after a couple of weeks, I visited my doctor. By the time I got in to see her, almost my entire left side didn’t feel the way it was supposed to. I couldn’t feel the chair under me, I could only feel warm. It was in my leg, up my back, neck, face, and was crawling into my ear. It was really weird.
It’s a good thing that my doctor knows me well, I tell you, including how easily I brush things off. She was taking this more seriously than I was. In this case, she wrote a referral for an MRI without telling me why, and added the comment of ?MS at the top. I went home and looked up Multiple Sclerosis. Suddenly, a whole lot of my life made sense to me. What I thought was normal (at least it was for me) was apparently not. But before I gave in to the idea, I went for the MRI.
This second MRI in ten years yielded the same result and I took it just as casually. My doctor, however, did not. I was given a referral to the local Neurologist. He wasn’t able to see me until October, but he did recommend that I head up to the BMRI MS clinic in Camperdown for a second opinion until I could see him in October. The lovely doctors in Camperdown sent me for two more – high resolution – MRIs, blood tests, Visual Evoke Potential tests, and all the rest.
On Wednesday 11th September 2013, I sat down with the wonderful Ass. Prof. Michael Barnett at the MS Clinic held by BMRI in Camperdown. We went through the results of all of the testing I’d been through. Blood tests were all negative. Visual Evoke Potential tests were all standard. But my high res MRIs (under contrast) showed a few lesions. Most of them seem to be in my spine, with the biggest sitting right where I’d had the disc replaced at C5/6 in 2012. According to the guy that knows all about MS, I am lucky. My case is mild. In his words, I’ll be “just fine”. All of this information was sent to my local neurologist, who prescribed Copaxone.
Nearly ten years after the first recognisable signs of Multiple Sclerosis, it was confirmed that I have gremlins in my brain and noggin. I now knew for sure that I wasn’t making all of this stuff up. Also, it seemed that everyone else took the news so much harder than I did. I mean, I’d done some reading here and there while I was going through testing, because I wanted to understand what was happening. The more I read, the more confused I got at times, because there are no two people who have the same experience. All I knew for sure is that while everyone loses the ability to walk and talk, and that eventually we all pee ourselves… but I’ll get there sooner than usual.
Well, this has been one heck of a long entry, but it is a basic description of the beginning of my MS Journey. I’m not wanting to get too in-depth today. For the next entry, I’d like to talk about the aftermath of the diagnosis. This includes learning about medications, options, treatments, etc. Also, how amazing my friends and family have been.
Until then, thanks!
The Purity Of Evil/IRG Wollongong