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My multiple sclerosis diagnosis journey

My multiple sclerosis diagnosis journey

The MS journey is a long, confusing, and frustrating road to travel. The starting point is always the scariest. My journey definitely was, as it is for anyone going through such a gruelling trek. I have come to realize that I never really explored my journey. I am not sure why. It could be that it is too difficult and scary to explore that part of my life, or it can be as simple as that MS has made life pretty busy and I haven’t been able to slow down to reflect. I am at that time where I feel like I should explore that time during my diagnosis. Even if it is hard, it might be a way to see how far I have come.

I knew something was wrong... but what was it?

It is weird how we don’t trust our own bodies, but it does give you signs that something is not right, but for whatever reason we ignore the warnings until we absolutely can’t anymore. The ‘not right’ feeling becomes too much to handle. I’m sure everyone who has been diagnosed with MS knows that the not right feeling is probably different for all of us. One thing I am sure is probably true: it was one of the scariest things that we could go through. I know it was for me. That not right feeling was a simple thing of my legs feeling heavy and tired for some reason. I had to stop and rest after shorter distances than before. This can’t be just getting older. I was in my early 30s. I was in fairly good shape. I exercised and ate a fairly healthy diet. What the heck was going on? I was scared to talk to anyone about it, as I didn’t want to worry any friends or family, because, as you know, it is probably just a vitamin deficiency. My B12 is low. Yeah, that’s probably it. Silly me, thinking it was something more than that. I am an invincible, early 30-year-old man living in Canada. Bad things don’t happen to me until well later in life. The ego I had was big, but I’ve realized that using the ego defence was just a way to overcome my true feelings of being terrified. However, this was a different not right. I knew I needed to see a doctor. I needed someone in a white coat to tell me it was just a B12 deficiency.

I was in between doctors at the time, so off to the walk-in clinic I went. The doctor did a physical examination and couldn’t find anything wrong. Great, I thought. It’s low B12 isn’t it? Off for blood work I go, and I’ll come back next week for the results. Next week came, and all my vitals were in perfect range. Not a B12 deficiency? Now I’m a little worried. He gave me a referral to see a rheumatologist. Arthritis? Sure, I knew people my age who suffered from that. I could figure out a way to live with that. The rheumatologist determined pretty quickly that I don’t have arthritis. Another referral. This time to a sports doctor. Ahh, yes, I am young and play some sports. It must be something to do with that. A slipped disc in my back, perhaps. Secretly, I knew it wasn’t, but maybe and hopefully. No, it wasn’t anything like that. Yet another referral. Now it is getting scarier. I am going to see a neurologist and have to get an MRI. I’ve never had one of those before. Little did I know that I would become quite the expert on MRIs, but I digress.

Meeting with a neurologist was a different experience. First off, I couldn’t help but notice how beautiful the office was. It was an office that was inviting and well decorated. I sat in the waiting area for my name to be called. On the wall was a big, flat-screen TV showing BBC Planet Earth. This one was about the deep sea. I still can’t decide if it was relaxing or a metaphor for the dark abyss of the health journey I was on. I hear a voice call out my name. Here I go, hoping to get some closure. I sat in the office, and the doctor walked in, and we went through the usual small talk and general medical questions. Another physical exam, and then we discuss my MRI results. Inconclusive! What?! Nevertheless, another MRI was requested. This time, the doctor gave me a stern warning not to do any physical activity. He later disclosed that he thought it may have been a brain tumour that I was dealing with, and he was worried that over-physical exertion could be fatal. Yikes!

Finally - a diagnosis!

I had about 2 or 3 weeks between appointments to get the MRI and return, and hopefully a final diagnosis. During that time, my mind raced, but it was like my body was trying to tell me what was wrong. I did what everyone does in the 21st century: I Googled my symptoms and Googled, and then I Googled some more. One thing started to become clear. The same diagnosis always kept popping up: multiple sclerosis.  I conceded that MS was probably what I had. Although I still needed the doctor to confirm. He did that at my next appointment. Even though I had MS on my mind, hearing the words “It’s MS” still felt like a kick in the gut. With the diagnosis came a new doctor from the MS clinic this time. Oh, and two more MRIs, just to be sure.

I know everyone has an MS diagnosis story, and some may be longer and different than mine, but one thing is the same: going through the process of finding out that you have MS really sucks! I hated it, and I hate living with MS. I hate what it’s taken away from me. On my bad days, sometimes I wish it was that brain tumour. I don’t really, but the physical and emotional drain of MS and knowing it is never-ending does take a toll. I don’t know where my MS journey will take me in the days, months, and years to come, but the one thing I do know is that there’s probably going to be an abundance of medical appointments with my MS team. I guess that’s what a journey is about. Although it would be nice to try a different journey to travel. Perhaps something a little more fun and less scary.

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About the author


41, Canada, Primary Progressive, DX Feb 2015