My MS Diagnosis Story – Part 1

Putting my entire MS diagnosis story up on my blog is a bit out of my comfort zone and I have been debating with myself for a while about whether or not to do it. In the end,comfort3 I decided that if my story can help someone else, then it’s worth putting it out there for the world to see. Perhaps you know someone who is waiting to be diagnosed, who is recently diagnosed, or maybe you have a loved one who is looking for answers or you are facing a diagnosis yourself.  If one of these scenarios fit, it is my hope that my story can help in some way or another. So I don’t bore you to death and because this is a long story, I’m going to break it into a couple of different posts.  I’m also sure that some of you are thinking, good Lord, does this woman ever not think about food?….Sometimes, yes but most times, no!  (Watch for my yummy Keto Lemon Cheesecake jars hidden in my next post!) For now, here we go with my story!

According to the MS Society of Canada, MS is currently classified as an autoimmune regenerate-damaged-nervesdisease of the central nervous system (brain, spinal cord). The disease attacks myelin, the protective covering of the nerves, causing inflammation and often damaging the myelin. Myelin is necessary for the transmission of nerve impulses through nerve fibres. If damage to myelin is slight, nerve impulses travel with minor interruptions; however, if damage is substantial and if scar tissue replaces the myelin, nerve impulses may be completely disrupted, and the nerve fibres themselves can be damaged. Imagine a raccoon chewing through a telephone cable before hands free existed. Can you imagine if our brains could go wireless?! 

In 2003 or 4 (?) I had a serious car accident on my way home from work.  At the time, we drivelived in a town about 35 minutes from where I worked and I liked to take the back road whenever I could.  It wound lazily through the countryside and I found driving this route was a great way to decompress after a long and stressful day.  I was at the intersection waiting to turn left onto the highway for the final 20 minutes to home.  As I sat there patiently waiting, a car was in the turning lane to turn on to the road I was on. He had his blinker on and I distinctly remember waiting to be sure that he was totally committed to the turn, which he was.  He started his turn and the coast was clear (or so I thought) for me to turn left onto the highway.  Apparently a small car was tucked up behind the turning car, the only problem was that he wasn’t turning and I did not see him until he t-boned me.  I don’t know if you’ve ever been in a car accident, but the sound of metal on metal is not one that you forget easily. My brand new car was totalled and I was lucky to be alive.

Fast forward to late 2004 and I was having some issues that I attributed to the car accident and I was tired, very tired.  I wasn’t overly worried though, I just chalked it up to mtired1y workload and the stress I had been under.  At the end of the year, I recall sitting across from my co-worker telling her that I didn’t think I could go through another year like the one we had just had.  Our community was growing with leaps and bounds and of course, I was in a community development position. We were undertaking new projects daily, we were on the go and the pace was fast and furious from sun up to sun down. I was on call and worked on weekends and in the evenings and I had difficulty coming up with a good time to even take a sick day  it was a vicious roller coaster ride that I couldn’t get off. I woke up every morning not sure if I had enough energy to have a shower, but somehow I managed to push through the exhaustion.

One day in October, I woke up to my alarm clock just like every other day, but on this day I swung my legs over to get out of bed and I fell when my feet hit the ground. It was astired2 if my legs forgot what they were supposed to do. My husband helped me to my feet and I brushed it off as sleeping weird, so I went about my morning not giving it any further thought.

For the next 2 weeks, I had odd sensory issues in my legs. I would try to take a step and my legs wouldn’t cooperate.  It took a real concentrated effort to walk across the parking lot.  At other times it was as if I were walking through knee deep mud, a symptom descriptor that I now know all too well.  By the end of 2 weeks, I knew that something was going on…but I still believed whatever it was, had to do with my car accident. Maybe I had a pinched nerve or a slipped disk. I had no idea exactly what was happening, but I had no reason to think it was anything serious.

During that time, I also became aware of some sensory issues with my right hand.  I can arm1only explain it as feeling velvety… that even a word?  It felt as if my skin was velvet at times and at other times it was tingling and prickly. There was another episode where when I bent my head it felt like there were sparklers going off in my arms and legs.  It was then that my husband said I needed to go see the doctor. So I made an appointment to try to sort this out.

My doctor at the time was a nice older man who was nearing retirement, but he grabbed ahold of what was happening to me and was on a mission to get answers before he handed me over to a new doctor.  He sent me to a neurologist who put me through a round of neurological tests and set me up for an MRI the following week.  He was initially looking to see if there was maybe a slipped disk or a pinched nerve that was causing my issues.  Not once did he suggest I may havemri2 anything else going on so I went in to the MRI thinking physiotherapy would be all I needed to get back on my feet.  About 30 minutes into the MRI, the technician told me to hold tight because she wanted to get someone in to look at my scan so I waited and waited with many things running through my mind.  What are they seeing? I was starting to get nervous.  They then pulled me out to inject contrast (which I had never heard of) and back in the tube I go for another 45 minutes.  I finished the MRI and went to the bathroom to get dressed, nobody said anything except that my doctor would be in touch soon.  I went home feeling a little anxious and sick to my stomach.  4 days later, I got a call from the neurologist to come back in for the results, so I decided to go back with some moral support. My husband took the day off 103529-In-The-Book-Of-Lifeand we made the drive back into the office not sure what they were going to tell us.

“You have Multiple Sclerosis”. Whether uttered by your family doctor, your neurologist, or your significant other, these three simple words have a lifelong impact.  For people with multiple sclerosis (MS), “diagnosis day” is unforgettable. For some, it’s a shock to hear they’re now living with a chronic condition. For others (like myself), it’s a relief to know that you aren’t going crazy and that there is something legitimately causing your symptoms. But no matter how or when it comes, each MS diagnosis day is unique.  I call it “diagnosis month” because it took a month for it to begin to sink in, partly because I had never heard of Multiple Sclerosis before I sat in that office and partly because I was in denial……I’m not going to lie, some days I still am.  My husbands face told me that things were going to change and I quickly started to realize the severity of the situation. So, I immediately went home and did what the doctor told me not to do – I turned on the computer and googled MS – that’s my first word of advice to those who  are newly diagnosed, DON’T GO HOME AND GOOGLE IT.  Itfear1 will just scare you – a more productive thing to do is to talk to your neurologist and come up with a plan tailored to your own specific needs.  Over the next month, I felt lost and afraid. But tried not to give in to those fears, because what if it wasn’t even something worth crying about? I tried to play it off like it was not a big deal.  It was just two little words. I wasn’t going to let it define me, especially if I didn’t even know the definition of those two words yet.

Of the more than 2.3 million people worldwide who are diagnosed with Multiple  Sclerosis, I am only one story. I am a wife, a mother, a daughter, a daughter-in-law, a sister, a friend, a woman living with an incurable and unpredictable disease. And even though I am only one person, my story can add some value by educating others about what it’s like to live with an autoimmune disease. And even though, I often wonder why I got MS, I do know that one story, MY story can make a difference to somebody else.  What I do know is that MS is NOT a death sentence.  It is NOT something that should define who you are.  It is NOT something that has to be feared.  An MS diagnosis IS something that will allow you a chance to redefine your life, it IS a chance to live in the moment and it DOES give us the opportunity to re-prioritize what is important to spend our energy on each and every day! My MS diagnosis HAS helped me to be present and to embrace the people who mean the most to me every single day. It HAS given me the power to love unconditionally and to have more empathy and compassion towards others who are fighting battles that I know nothing about.

Stay tuned for Part 2, where I will go into some detail about the months following my diagnosis and when I finally “heard” and heeded my doctors advice about working and what it was doing to my disease.

Until Next Time!


23 Comments Add yours

  1. Create Space says:

    Hi Raegan, it doesn’t feel right pressing ‘like’ as how can this condition be likeable but I really do like how you tell it straight and then I love how you make explicit the many positives it has brought into your life. I know your story can bring hope to many others who struggle. Keep writing & sharing. Marie x

    1. Thanks Marie! I believe (for me anyway) that my diagnosis has been a blessing in Disguise. I was on the fast track to a health disaster and I was forced to re-look and re-evaluate many areas in my life to make room for a healing journey! Thanks for reading!

      1. Create Space says:

        That’s exactly what I picked up from your post Raegan. I’m so glad you were able to find so much good in the bad…that’s something that eludes a lot of people and something money can’t buy! Xx

  2. u2hearts says:

    I think it is wonderful you told your story. I’m looking forward to reading the next part. You will help someone and that’s what is important. We all have our stories and we all support each other.

    1. Thanks so much for reading today! I am always pleasantly surprised by the support I get from all of my awesome fellow bloggers! Xo

  3. Thank you Raegan! This was amazing and really wonderful to read. Yes… MS does not define us because we are still us. It is something, that if we chose to, can help make us stronger as long as we have the motivation and drive to do so.

    1. Thanks for reading Christy! I love the simple statement that we are still us and that’s really what it comes down to at the end of the day isn’t it?! Thanks again for reading! Have an awesome day!

  4. Raegen, I am glad you were able to share your MS story. I know it is incredibly painful to think back to the day you heard the news, but sometimes sharing it helps heal your mind. I remember the day I was diagnosed like it was yesterday when it was actually 18 years ago! MS might try to take control of our lives, but it definitely does not define who we are!! I always say that yes I have MS, but MS does not have me! You have so much strength and I truly admire you Raegan!!! I hope you have a wonderful weekend!!

    1. Thanks Alyssa! I admire your strength and find we are going through very similar things at very similar times! Thank you for reading my post! It’s a long weekend here so there is a lot of things going on in town so I’m sure I won’t be bored! Have a great weekend

      1. I do agree with you, we do seem to go through similar things about the same time! I think this might actually help us in some ways! You are very welcome, I enjoy reading your posts! That is wonderful you have a long weekend and I hope you enjoy every moment of it. Just out of curiosity, why do you have a long weekend? Here in the states we get few long weekend:(!

      2. This is BC Day and Canada decided a few years ago that we should have one long weekend (Statutory Holiday) everyone month so they added one in February called Family Day!

      3. That is wonderful!!! Canada seems more appealing everyday! My husband has been wanting to move to Canada for YEARS and he wants to move even more now because of the man in the white house! I hope you enjoy the fun LONG weekend!!!

  5. roninjax says:

    Wonderfully written Raegan. Your story is an encouragement to others and also will help us better understand MS itself. I pray you will gain more strength day-by-day and that the medical community will continue making improvements toward helping so many with MS. And yes, maybe one day wireless may be developed. It’s always possible.

    1. Thanks so much for reading my story! I’m getting stronger everyday and I hope that I can give some encouragement to others!

      1. roninjax says:

        I’m glad to hear that.

  6. Robin says:

    Nice post. Thank you for sharing your story.

    1. Thanks so much for reading!

  7. da-AL says:

    Reagan, you are truly brave — many thanks for sharing your story, Reagan <3

    1. Thank you so much!

  8. I think it is great that you decided to share this personal story. The more awareness we can bring to chronic illness/chronic pain conditions, the better! I’m sorry you have to deal with this disease on a daily basis, but it sounds like you are strong and determined to make the best of it.

    1. Thanks so much for stopping in to read my story. If I can help even one person know they aren’t alone, that’s success to me!! Thanks again!

  9. This is a beautiful introduction to your MS story! Some of your story is similar in ways to mine, some of it is different, but I love the honesty and real way you’ve told your story, I look forward to reading the next part of this!

    1. Thank so much for reading, I figure many of us have similar stories and it’s nice for me to know that I’m not alone!

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