My Journey with MS
First of all, hello! Thanks for stopping by and considering to donate to my annual MS Walk. This is my third year participating in the MS Walk. I've raised about $5,000 over the two years and I'm super eager to continue to raise funds and more importantly awareness about MS.
Where does my story start?
My experience starts with a few weeks of headaches and some uncomfortable pain behind my right eye. After a few weeks of it just driving me crazy - I had tried everything (new contacts, new make up, eye drops, etc.) and was still having problems. It was a Friday when I woke up and realized there was a major blur that had shown up in my vision on my right eye. I went straight to my local medi-centre and tried to explain what was happening. The doctor ran me through some basic vision tests, and I will always remember telling him "it's really blurry, like a smudge" and he kept saying, "but you can see!". He immediately scheduled me an appointment with the specialists at Royal Alex for advanced testing. A full day of testing later, a lot of stress, and a full on breakdown .... it was confirmed that I was experiencing optic neuritis, a condition that could improve but likely to permanently change my vision. This also triggered many next steps in order to determine "why" this happened in the first place. That's when the looming, "MS", first surfaced.
Tests, Questions, and More Questions
I went into the rest of my summer and fall (with two major vacations!) needing a lot of support from friends and family. Especially in the dark, it's not always easy to see small differences in things like cobble stone, dips in the ground, and I often get overstimulated in large groups with lots of visual sensory material to take in. I'm really grateful my friends support me (literally, took my hand and guided me through crowds) so that I didn't completely retreat into being completely depressed about my life possibly being changed forever.
I had to start the "maybe it's MS" routine of tests, tests and more tests. Lots of questions and over-thinking everything that happens with your body as a possible symptom (it's enough to drive you crazy, literally!!). I've done two MRI's to date (fun fact: I despise hospitals and MRIs - it's the most stressful thing I've ever had to do). My first MRI indicated 15+ lesions on my brain, but only one of the two "types" you need for a diagnosis in Alberta. Luckily, my second MRI showed no significant changes, which means that if I do have MS, it's progressing slowly, which is good news. I have multiple historical factors that indicate an increased likelihood of an MS diagnosis, such as: family history, history of nerve conditions (Bells Palsy), age at presentation of symptoms and that women in Alberta are at a higher risk of MS than other provinces in Canada. The only other test my doctor can offer at this time is a lumbar puncture. However, the catch is, it could help confirm the diagnosis, OR it could still be a "no MS... for now" - and with a test that carries that big of a risk, it's not quite time to take that option. So for now, I am living with assumption that it is highly likely it is MS, but we don't know for sure... yet.
Everyday is symptom management and essentially... waiting for something worse to happen. That sounds harsh, but it's the reality. It's taken me a long time to come to accept the fact that I'm going to have to get worse before I can get a diagnosis or a treatment plan or for the Doctors to head down a different trail. I've affectionately named my vision challenges "Smudgey", and while it improved significantly (which it wasn't expected to), it's still there, my eyes have adapted but it's still part of me. I keep track of all things that could be symptoms so I when I have regular check ups with my doctor or my neurologist that I can remember what I've experienced (things like numbness, pain or weird spasms, ringing in my ears, loss of balance, and fatigue). And of course I have my emergency symptoms that mean it's straight to the hospital.
So why the MS Walk?
I think half the battle, certainly physically but also mentally, with conditions like MS - is just getting a diagnosis. The more research that is done, hopefully the increased likelihood we will get to a place where we can diagnosis sooner and have a clearer line of sight on this condition and how it impacts people's quality of life. I consider myself extremely privileged and grateful that I've been able to continue to live my life - while some things are harder and there are certainly difficult days (mentally and physically), I haven't fully lost any functioning. However, at this point, it's increasingly likely that someday I will - and I want the research, the diagnosis, the treatment to continue to improve for me and many others who already live with or may one day live with this condition.
Final Thoughts & all my Gratitude!
THANK YOU. The past three years have been a roller coaster for me as I have been navigating these symptoms and the mental health impacts that come with process. I don't really have the words to express my gratitude for everyone's time and support over the years. I wouldn't have been able to do it without the most amazing family and the best friends, colleagues and kind strangers who have also been affected by MS who contribute each year. Thank you for the ongoing support and for those who are supporting for the first time. Whether it's just joining the cause, fundraising yourself, or just donating anywhere from $5 to $500 - you're making a difference - especially in my life. I'm walking for all of you, and there's no MS-ing around about it!