I have Multiple Sclerosis. This is my diagnosis story.

When my chatty neurologist told me “you have MS” I shrugged and said, “Well, how bad can it be? I’ve had cancer. At least MS won’t kill me.” We stared at each other for a few moments in awkward silence. He adjusted his glasses and eyed me with concern, waiting for me to breakdown or something, and I glared back, tapping my foot, waiting for him to just get on with it.

My prize for winning the staring competition was a stack of pamphlets neuro-guy slid over to me as he explained what MS was, in case I hadn’t read every single article on the whole internet. Then he mentioned treatment options, recommending I make a decision by our next meeting. I tucked the pamphlets in my purse where they would stay, unseen, for three months.

I left my appointment skipping down the street to a nearby coffee shop and sent the following text to my hubby. “Hi, babe! I have MS. Do you want anything from Starbucks?”

He immediately called and said, “I’ll take care of you.”

“…and?”

“Uh, I’ll take a Grande Caramel Macchiato?”

I know what you’re thinking: I was in denial. But I wasn’t. Not really. My soon-to-be-MS-foggy brain was very concerned that statistically, I’d be in a wheelchair in ten years, making my travel addiction harder to maintain. My sun-worshipping body ached at the possibility of developing heat sensitivity (do you know how many bikinis I own? Me neither). It also dawned on me that I had kinda never ever wanted to go blind or deaf and who the fuck would want to use a catheter to pee?

So why was I super chill over my diagnosis? I was not. Promise. In the months while I waited to see neuro-guy again, when I should’ve been reading those pamphlets, I obsessed over weird things. I researched where to get a gangster blinging cane resembling the one Biggie Smalls had. I made a list of hard to reach places I’d have to travel to while I still could (as if I needed an excuse). On days I was real mad at MS, I’d snap at my innocent hubby when he’d say stupid things like, “I don’t feel like dancing right now.” Didn’t he know I only had ten years left to dance!?

My near denial/almost chill attitude could’ve been attributed to surviving cancer, the pesky disease which taught me not to worry about things out of my control, so damn far in the future, that may never even happen. But the major reason was that other than a bit of numbing here and there, I had no MS symptoms. I felt fine. The freak-out came one week before my follow-up appointment with neuro-guy when I finally decided to read those fucking pamphlets.

Here’s the thing, when I had cancer the advice went something like this, “Raquel, remove your bone and you’ll probably live. Leave it in and you’ll definitely die.” Every single doctor across the board agreed with one another (literally, a board of doctors). So yes, my cancer experience was scary, excruciating, and life-changing, but it was straight forward, well researched, and ancient.

Multiple Sclerosis? Argh. The pharmaceutical treatment for MS is just as varied as the disease, each with side effects as scary and plentiful as the symptoms. The pamphlets told me (and I might be paraphrasing) “we’ve been testing this on unsuspecting humans since 2012, and so far, 35% of them are OK” and “side effects include losing your beautiful long curly hair, embarrassing and explosive diarrhea, and sudden death.” 

But surely the MS community helped me decide, right? Nope! Their advice and experiences swung up and down just like my moods did over my diagnosis. What worked for one person didn’t work for another.

With a week before decision time, I spoke with and met with others living with MS, my family doctor, a functional MD, naturopaths, and another top-rated neurologist. None of them gave me what I needed; comparisons, irrefutable proof, a long history of results. So I dug deeper, hoping to find testaments and success stories from end-users. I watched a minimum of one-hundred videos about diets claiming to cure me, and read thousands of comments on said videos about how those same diets hadn’t cured them.

Choosing a treatment plan felt like choosing a side in an election. Every candidate campaigned their beliefs like the future of MS relied on their ability to convince the world that all we needed to do was; take pharmaceutical medication, take one million vitamins, get B12 injections, drink herbal teas, unblock meridian lines with acupuncture, eat more yoghurt, cut out dairy, become a vegan, eat meat and berries like a caveman, live closer to the equator, live stress free (ha!), eat more kale, cut out carbs, stop drinking wine (ha!). 

By the time I made it back to neuro-guy’s office, I was confused and frustrated. All I knew was that doing nothing wasn’t an option for me. I didn’t want to leave my prognosis to chance and so I chose the medication that shouldn’t suddenly kill me. I left neuro-guy’s office deciding I’d also dabble in the idea of cutting some shit food out of my diet, taking one million supplements, and living stress-free by drinking MORE wine, not less (sorta kidding about the wine). I started going for massages regularly, and most importantly, I booked a flight to Brazil and planned a trip to Peru.

My one-year diagnosiversary has come and gone without a party and I’m now ten months into treatment. I went to Brazil (and Boston, and Panama, and Western Canada) and am looking forward to Peru in the fall. I must be feeling good, right? Well, I didn’t suddenly die and my bathroom business is “moving” along just fine. I’ve lost enough of my hair for only me and my mother to notice but it’s already growing back. I’m convinced the meds are to blame for my new inability to focus after 7 pm though neuro-guy says MS is to blame (we’re still having a stare-down about this one). And the numbness is mostly gone. So ya, I still feel fine.

But the biggest difference today is my comfort level with the treatment I chose. I’m no longer freaking out. It doesn’t mean that my treatment plan is a forever plan, though. I still read the whole internet all the time, and so, as more research and better results become available, I might change my mind. Until then, special note to the next well-meaning unsolicited advice-giver who tells me how I should eat to cure myself of my MS: you will be a villain in my next sci-fi thriller. Also, to the kind stranger who told me they knew someone who died of MS, you too, will guest star in my novel. #kiddingnotkidding