My hardest journey- Diving into diagnosing Multiple Sclerosis (MS)

For my entire life all I wanted to do was travel. I grew up with stories of my parents traveling. It wasn't like they actually went places often but the way they told the stories made those places so special in my mind. They went to Belize for their honeymoon, but this trip for some reason stood out as the biggest adventure of their lives and I wanted to experience it too.

As a child I drew pictures or maps and wrote stories of the places I would discover deep in the amazon rain forest or other places around the world. I was fascinated with biology but also with the diversity in culture and history.


We all grow up eventually and since the days of people like Darwin and Jacques Cousteau exploring for the sake of exploring are gone, I needed to find some way to make this into a career. I became a biologist. I figured this was a career that could let me see the world and experience it all while I might actually be able to help conserve the rich biology it has.

Nova Scotia in 2004 when I wanted to become a Marine Biologist

Well this year my life was slowly shattered. Yeah okay you might be thinking I am being overly dramatic here, but just wait. I will explain.


Earlier this year I felt the left half of my face go numb. This was followed by my left eye getting very blurry. This happened on and off for about a month or two and was accompanied by by hands, arms or feet getting numb or tingly periodically.  I hate going to doctors or hospitals (no offense to my friends who are doctors) and typically I would avoid this at all costs but loosing my vision is probably one of the things that scares me the most. So when it comes to my eyes, I am not going to fuck around. 

Algonquin Park winter camping in 2012

I went in to a clinic to talk about what was going on and to get a referral to a specialist. The doctor treated me like a typical hypochondriac, despite the fact that I have a family history of MS (my grandmother had it an died before I was born). I was told it was likely just stress or a vitamin B deficiency.  I understand that it is standard procedure to cover all your bases in a diagnosis but treating someone who is concerned about their health like an idiot is offensive and unprofessional. But despite the bad bedside manner I was quite happy about the idea of something like a vitamin B deficiency being the issue.

Second trip to the tropics, Costa Rica 2011.

After a blood test confirming my B12 is perfectly fine I  was wired up to a machine that measures nerve impulse while I stare at a flashing screen, get beeped at or get electrocuted (gently of course). Following this there was an MRI.  My first appointment with a neurologist is a complete blur in my mind now.  I blanked out of shock and I didn't ask any questions I needed to. I couldn't even think of any in the moment.  All I remember when I walked out of there was "optic neuritis", "MRI was highly suspicious" and basically "it isn't confirmed yet that you have MS but it is likely". They sent me home with a big pile of information packets about MS and advertising pamphlets from drug companies.

Do you like my sphinx moth mustache? (Jamaica 2012)

A spinal tap, another round of blood tests and two more MRIs were scheduled. I did the blood tests first. The morning I went in for the blood test the woman taking my blood gawked at how many things the doctor had requested testing for.  She emphasized that 3 vials is normal and I was getting 10.  Needles don't bother me at all but without any instruction of if I had to I had fasted just in case it was required and around vial 8 or 9 I started to get faint and then I almost passed out. I was dehydrated and had low blood sugar. I had filled 9 out of 10 vials! So close to being done but NOOOOOO I had to lay down for half an hour before they would take the last one and then I had to wait around longer after that before they would let me drive. Extremely understandable from a safety perspective and I didn't protest, but I was very very late for work that day. Those blood tests found that I have low vitamin D and will develop rheumatoid arthritis.

Some nighttime wildlife photography in Ontario, 2012

I had to take a day off work for the spinal tap (also called lumbar puncture) because I was told to lie down and take it easy after and I wasn't supposed to drive. They disinfected my entire back and I had the lean forward hugging a pillow and stay still. There was a localized anesthetic that I guess must have helped a lot because it didn't really hurt much to get the needle in. Then you sit and wait. The needle in thin (yes I wanted to see it) and it takes about 15 minutes to draw all the fluid they need (the fluid is clear!- yes I wanted to see this too, I am odd). The weirdest part about the whole thing was the tug of it coming out. The apple juice they give you after was yummy and there was no passing out at all for the blood test that corresponds to the spinal tap (needs to be done the same day).  Afterwards the doctor wrote me a note for taking a few days off if I needed it. My friend picked me up from the hospital  because I was warned that they wouldn't let me drive home after.


I was told to take it easy all day. The laying down for 6 hours was an exaggeration but "if I get any back pain or headache I should lie down".  I got home and felt fine for about 3 hours. I had a bit of pain in my head but the doctor had described getting migraines, which I get frequently, and these were barely a headache. She also said that medication won't really help with the pain but I can take it for the placebo to see if it takes the edge off somehow. Nothing was prescribed. That evening my back started to ache like crazy. It wasn't the typical muscle ache I was familiar with but skeletal, like the very core of my body was hurt. Makes sense because it had been poked and sucked out a bit. I was surprised it had taken so long to start hurting. I had actually thought I was in the clear and wouldn't experience any pain. At work the following day I was hunched over and trying to not look like I was in pain but coworkers definitely notices and asked.  I hadn't intended on telling people at work yet, my family had actually advised against it until I knew for sure but I work for a very small company where everyone is so friendly that I really didn't want to keep it from them and I definitely didn't wan to brush off their questions or lie so I told a few coworkers, hoping that despite the small company they wouldn't tell the owners yet (I wanted this to come from me and in a more formal setting).

The aches continued for three days but got less each day. That weekend I was carrying a box of 12 bottles of wine out of my apartment and I had a back spasm (shooting pain all the way up my spine). I luckily was able to slowly collapse on the floor at the door to my apartment and stayed there for about 5 minutes. They told me no heavy lifting for 3 days and this had been more than 3 days! The back spasms continued terribly that night and the following morning but got better after that.

Herping in Costa Rica, 2012

My family and friends were either treating me like I was dying or acting like nothing was wrong. I am not really sure what an appropriate reaction is but neither of these really sit well in my head. I basically have been trying to keep it secret or hold it together so that nobody will worry about me or pity me. Over all of this time getting poked and scanned, etc. I really thought I could somehow deal with it without it affecting my life. I was under the mistaken idea that we have drugs that fully stop the progression of the disease. I figured that 'okay I might be on drugs for the rest of my life, I might not be able to live in other countries ever because I won't have free health care but I have a good job and Canada is a good place to be for this'. With this attitude at my back all I wanted was an actual diagnosis. I wanted answers now so I could deal with it and figure out my life.

But then there was a moment when my snow globe shattered. A few of my coworkers and friends are really into podcasts. I heard about a very popular one called Sickboy. I looked it up and they had one podcast on MS. A woman diagnosed with MS at 23 and who was still quite young when on the show talked about her life with MS. Most of it was just chitchat back and forth, discussing how expensive treatments are (MS is pretty much the most expensive diagnosis you can get), discussing accessibility in Toronto, etc. But eventually it really sunk in and I just lost it. Meds hadn't worked!  They could slow the progression but it didn't actually stop and in the time between her diagnosis and the time of the show she had lost the ability to walk without aid, experienced frequent loss of bladder control and constantly deals with accessibility issues and people staring at her since she is a young woman with a walker. The way she talks about it on the show and on her blog which I found later she rocks it.


But that was later, in this moment I was really losing it. I was balling my eyes out imaging that as my life. Being unable to get up a staircase, let alone the huge massive staircase on Machu Pichu, or any mountains that I want to climb in the future. I couldn't fathom this. I wanted to travel, to be a great biologist, to make a difference in some way even if it is small.  How can I do fieldwork in remote areas if I could stop being able to walk randomly and eventually not be able to walk easily on my own? That is my career, my hobby, my passion.... That is... me!

I don't want to need help. I don't want to be a burden.

Herping at Botany conference in 2016 in Edmonton

I realized that I wanted to do something drastic. If I have MS my idea of traveling during retirement has gone to shit. I won't get a retirement with traveling, at least not how I envisioned it. My life went from having a good FULL time PERMANENT job as a ecologist (something very rare to get fresh out of University) where I have a good about of paid vacation time each year and get to do fieldwork every summer, to must live life and travel NOW OR NEVER!

Work on alvars in Manitoba (2017)

I have no idea what my future will bring but I need to make the most of it. It happens that my boyfriend got a postdoc position in Kochi, Japan. Okay lets do this! Now or never means I need to travel as much as I can while I can still kick the ass of these damn mountains. Japan for a year sounds great! I have no idea what comes after that but I don't really care yet. I know I am potentially giving up a great job for this but I really do need to do this. To figure out my life with this and somehow find a way to go down feeling like I accomplished something and lived a fulfilling life.

This would hurt if it fell out of the tree and hit my head... (Florida, 2017)

 Well obviously that isn't even the end of the diagnosis. At this point my mentality shifted but I haven't even had my second set of MRIs and the results from the spinal tap aren't in yet. So maybe I don't have MS, but all of this isn't nothing, so I have something, and it's "likely MS"? Does that just mean the doctor is sugar coating it and trying to not freak me out before they know for sure?

Well I hope you enjoyed my random throwback photos that got tossed in here for some spatial relief and maybe some of my bad humour.