MS

My MS Diagnosis Story

August 8, 2018

My life was pretty normal in 2008. I had a 9-5 job working at a surgeon’s office as an admin assistant. My husband Robb worked the same hours as a sales director at a hotel. We spent our weekends hanging out with friends (usually at a bar or pub) drinking, eating, dancing, etc. Basically, a normal 20-something life.

We talked about traveling the world, and maybe having kids one day. Illness was never in those plans.

I considered myself a healthy person. I wasn’t exactly the weight I wanted to be, but I went to the gym and tried to eat right, but I always felt tired. Like, really, really tired. I had a hard time getting out of bed in the morning. I would often miss morning classes in college, and would sometimes call in sick to work, because I had this fatigue that was so debilitating. I thought maybe I was just lazy. But some mornings I literally could not get out of bed.

The Start of My Symptoms

The first time I felt other strange symptoms was when Robb and I were camping one summer. I woke up one morning and could not feel my arms and legs. It was like they weren’t there. The feeling quickly passed, and I assumed it was because I slept funny on the air mattress in our tent. It happened a few more times on that trip, and I mentioned it to my Doctor when I got home. The first thing out of her mouth was “well I don’t think it’s MS”. I was like, “Oh? Ok….” I didn’t really consider that. What a strange thing to say. She also passed it off as sleeping wrong. It didn’t happen again after that.

A few months later I was at work and had a terrible pain behind my right eye. The nurses I worked with told me it was probably a sinus infection, but I should get it checked out. I went to an optometrist, he rolled his eyes at me and told me it was a sinus infection as well. It went away for a few weeks, but one day the pain came back, only worse this time. It hurt to move or touch my eye, and I had a terrible headache. A couple days after the pain showed up, I started seeing white spots. I sent Robb to the pharmacy on a Sunday morning to see if they had some drops or something. The pharmacist told him to take me to the ER. I felt so scared. What was wrong with me? A blood clot in my brain? A tumor? The rest was a blur.

I didn’t wait in the waiting room, I was taken to a bed right away. They looked in my eye, asked me questions. No one could tell me what was wrong. They sent me home after a few hours with a referral to an Ophthalmologist. A few days later, and about 80% of my vision gone in my right eye, I saw the Doctor. He did his exam, held up a red pen and said, “cover your good eye, can you see the color red?” I couldn’t. He sighed and said he would be right back and had to make a phone call.

When he came back, he told me I had Optic Neuritis, a common symptom of Multiple Sclerosis. I didn’t know what to say. It had been in the back of my head since my GP brought it up (and I of course Googled my symptoms), that perhaps this was my problem. He called in a prescription of high-dose steroids, ordered an MRI and referred me to the local Neurologist.

Pictures of My Brain

I’d had an MRI before. When I was 18 I was diagnosed with high blood pressure. They thought I had a kidney problem, so they scanned them, but never figured out what the problem was. That MRI wasn’t scary. This one was. This was my BRAIN. Something was wrong with my brain and I was terrified. A few days later, my results came in. My brain showed lesions confirming a diagnosis of Multiple Sclerosis.

About a week later, I was in our local Neurologist’s office. He was the only one in town and didn’t have a good reputation. The rumors were true, dude was a total dick. He didn’t listen to me and just signed me up for a new experimental drug. “You should try this, they say its 70% effective in reducing symptoms, better than 30% for all the other treatments out there”. “Um…ok” I said. I asked him if I could go to the MS clinic in Calgary (which is 2 hours away), he said “I’M the MS clinic for this city, don’t bother.”

After this I went to my own GP. She said “Yeah, don’t see that guy anymore, we’ll get you into the MS clinic asap”. I visited the MS clinic in Calgary. I had so much information thrown at me. They gave me a bunch of pamphlets on the different types of drugs. I was told I needed to pick one. It was so overwhelming.

“You Need to Choose a Drug”

I didn’t want to pick one. My optic neuritis had disappeared. I felt fine. Yes, I was aware that it could come back, and there were about a million other symptoms I could experience as well. But these drugs scared me. The side effects sounded as bad if not worse than the MS symptoms themselves. I needed time to think.

Then, just as I was deciding on one drug in particular, I found out I was pregnant. We started trying after my diagnosis, which led to another diagnosis of PCOS (which is a post for another time).

My First Baby

I was so excited. I had something to focus on other than trying to pick a drug. My pregnancy was uneventful, other than some hypertension issues during the end. I gave birth to a beautiful baby girl in May 2009. We named her Rowyn. She was perfect, and I felt great. It had been a year since my diagnosis and still no MS issues.

I went to my first annual follow up when Rowyn was 6 weeks old. My neurologist at the time told me to breastfeed no longer than 6 months so that I could immediately go on treatment. I was like, “Um, no? I plan on breastfeeding this baby for at least a year.” He looked at me like I was crazy. I’m proud to say I breastfed my daughter for 13 months.

On my next follow up, I was again encouraged to go on a drug. I refused. I felt great and I didn’t want the awful side effects. I felt like none of the medical staff supported me. They told me a relapse was inevitable. I ignored them. I had started exercising and focusing on non-processed foods. Rowyn was eating solids at that point, and I was much more careful about the food I bought. I was actually feeling great. Like, really great. I weighed less than I did before I got pregnant and I was less tired.
In 2011 we decided to try for another baby. I was in the best shape of my life. I got pregnant within 2 months. Another uneventful pregnancy. In June of 2012 I gave birth to our second daughter, Elia. I got a new neurologist that year. She was a lot more understanding and supported my wish to breastfeed which I did for about 14 months. But, she still wanted me to try a drug. I refused again.

I Became a Runner

I had lost most of my baby weight quite quickly after having Elia, but was still holding on to a few pounds, so I decided to start running. That was the beginning of something that would completely change my life. I became a runner, and a health and fitness junkie. Over the next 4 years, my body completely changed. As I became more and more fit, I was able to do more. I had more energy, I was less tired, I didn’t get sick as often. I ran my first race in 2016. After that, I was hooked. 6k turned into 8k, then 10k. The next year I ran my first half marathon with a time of 2:02. Then I ran two more in under 1:55. I joined Orange Theory Fitness and got stronger and faster. I started doing yoga. I completely cut processed foods out of my diet and started making everything from scratch.

I still went to the MS clinic every year for a follow up. I’ve had about 3-4 MRI’s since my initial diagnosis. No new lesions have formed. They’ve finally stopped asking me to pick a drug. Most likely because I’m no longer eligible for coverage. I’ve had no significant relapses since 2008.

Is it because of the way I eat? Because I run? I have no idea. Maybe it’s just luck. Either way, I’m living a much healthier lifestyle now than I was 10 years ago because of my diagnosis. I have no idea what the future holds for me. I worry about it all the time. Every night when I go to sleep, I think to myself, “Is tomorrow the day? The day when it gets me?” I feel like a ticking bomb with no timer. I like to think that healthy eating and exercise is keeping MS away. But the truth is, I have no clue. But I’m not going to stop. I’m going to continue this way for as long as I can. I’m going to raise my girls and travel the world and live my best life with my husband by my side.

My hope is that I can inspire others with chronic illness to show that maybe there is another way. Maybe drugs aren’t the answer? Maybe you can live this way too. That’s why I started this blog.

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2 Comments

  • Reply Jessica Beck August 30, 2018 at 8:28 pm

    Never stop your day dreams – because with passion, and courage like yours anything can be done! You are a true inspiration, Lindsay.

    • Reply Lindsay Engen September 15, 2018 at 6:38 pm

      Thanks for your unending support, Jess. I love you!

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