12.12.2017

It's The Worst Symptom of MS. Do You Have It?

Two weeks ago, I had a really good day. Not just a good day, a good MS Day. This was kind of a big deal, because for the last couple of years, almost all the fluctuations of my multiple sclerosis have been towards a worsening of symptoms; the pendulum almost never swings toward improvement anymore. I struggle to feel grateful for stability at the best of times, and for slower progression the rest of the time. But then, two weeks ago, in the gym with my awesome physiotherapist, Megan, we were both pretty surprised at how my hip flexors were performing. My balance seemed better than normal, too. I’d been intending to budget my energy in anticipation of a busier than average day ahead, but suddenly felt strong enough to party like it was nine months ago, so I powered through a full workout instead.

That evening, The Banker and I went to Toronto’s massive Christmas Market in the historic distillery district. It’s a popular place, with crowds and cobblestones to negotiate, but I was bent on sipping cider and seeing the 50 ft. tree. I wanted to wander through the light tunnel and see for myself what kind of people actually traipse around gnawing on massive turkey legs (spoiler: tacky ones). We took Optimus Prime, my badass convertible rollator/transport chair, because my plan was to walk as long as possible, knowing eventually I’d need a push.

And then I didn’t.

With one little break to sit and look at the enormous tree, I spent the rest of the evening on my feet. And I was stunned and happy and hopeful about how much stamina I’d had. Was my ketogenic diet finally kicking in? Was my increased strength because I’d recently given up sugar and dairy? Has the biotin I’ve been shelling out for over the last year finally paid off?

I’m not one to find something where there’s nothing. At the end of the day, I’m a realist. But any little improvement when you’re doing everything you can just to slow down decline can feel like a massive win. And, I felt like it deserved to be acknowledged.

So I said it out loud. 

Which was obviously a mistake. 

Two days later, I tried to ignore the weird feeling I woke up with on my head. Like I was wearing a hat. And then, the burning nerve pain that usually hangs out in my feet, started showing up in patches on my legs, and my hip, even though I’d stopped eating gluten a full 6 weeks ago. In my experience, new patches of nerve pain are often the first sign that the beast is waking up. Still, I didn’t freak out.

Two days after that, it was time to check in with my physiotherapist, and do a timed, 2-minute walk test; a standard, if surprisingly unsophisticated, measure of worsening disease in the MS world. I gripped my walking sticks, and tried to go as fast as possible without actually falling. I was in a race against my own decline, and I was desperate to get even one step farther than I had during the last test. But nobody watching me lumber along would have ever guessed I was in any kind of hurry, let alone what felt to me like running for my life. 

When Megan’s phone finally beeped to indicate my two minutes were up, I was nowhere near my goal. In fact, I’d lost about 20% of the ground I'd been able to cover since we’d last tested a few months ago. My heart sank with that familiar feeling. Progression. 

Then, 3 days ago, I met a friend for lunch. The Banker dropped me off, and knowing I only had to travel from the car to the table and back, I opted to bring my cane rather than my rollator. I knew it would only be a handful of steps, and sometimes the rollator can feel like such a pain in the ass. My friend and I had a lovely, productive lunch. Afterwards, I almost made it safely to the car. In fact, I was so close to the car that as I went down, I really hoped it would be what would break my fall. Alas, it was the sidewalk that caught me. And my face. 


Oh, hey, it's cool. I'm just gonna hang out on the ground for a bit.

Since then I’ve been replaying the walking test and the stupid fall, over and over again in my head. What happened to my good day? Why are my hip flexors still kicking ass while my right foot has just decided to stop trying? 

Is this because I forgot what beer is made of, and had half a bottle of Stella last week?

Last night I was more preoccupied than usual, thinking about this failing body, trying to be grateful for what it can still do. As I was rubbing my feet in my nightly attempt to get them to feel something other than constant burning, The Banker, seeing that I was in distress, asked me, “What’s your worst symptom right now?”.

I didn’t even have to think about it. “Fear”, I said. It’s always fear. 




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12.04.2017

What You Need To Know About Colds And Flu With MS

If, by the time you’ve finished reading this, you’re afraid to come anywhere near me, then I’ve done my job. It’s not you. It’s your pathogens. Notorious germaphobe and paranoid recluse, Howard Hughes, was on to something with his habit of setting his clothes on fire after a brush with someone sick. The dictionary makes mysophobia sound like a bad thing, and okay, maybe Hughes was a teeny bit mentally ill, but seriously. If cold and flu season has taught us anything, it’s that the majority of the population could stand to dedicate a little more time to soap and water. 

As a paranoid germaphobe myself, I spend the winter months nervously giving the side-eye to everyone with a bit of a red nose. I’ve perfected the art of opening doors and pushing elevator buttons without ever making contact with my skin. I wear gloves as much as possible, and never miss an opportunity to give them a swipe of hand sanitizer. I hate passing the peace, handshakes and hugs, free samples, and food on platters. When I hear anyone cough in public, I say a silent prayer that it was a smoker’s cough and not something communicable. I don’t care if it came from a ten-year-old. Ten-year-olds are first-rate germ factories.  

I am straight-up annoying to everyone I know. 

Annoying or otherwise, my fears have been validated by someone with a PhD. The last time I saw my neurologist we talked about how my MS is sadly progressing, despite my having had all the drugs. The big guns. There are no new DMD’s for me to try, and instead of leaving with a prescription, I left with strict instructions that the best thing I could do to prevent faster progression would be to stop getting UTI’s, and to avoid getting colds or flus like, well, the plague. 

While nobody likes getting sick, the consequences of a cold or infection for someone with MS can be catastrophic. I know, you think I’m being hysterical. But here’s the deal.

People with MS already have out of control immune systems that aren’t good at multi-tasking. Exposure to immune-modulating therapies can make it easier to contract infections, and they can last longer and hit harder. When MS is already messing up your life, getting sick can be debilitating. While this sucks, it’s not even close to the worst part. I could deal with bedrest and Netflix a few times a year. It’s unpleasant but temporary, right? Wrong.

The scariest thing about these infections is that, the trigger-happy MS immune system might be well-intentioned as it seeks to destroy that which it thinks is threatening, but more often than not, it’s completely fucking wrong. Poking at it with a stick can prompt an actual relapse that has nothing to do with snot, coughing, or phlegm. The consequences of a relapse can be permanent neurological damage. Yeah. All because of a cold.                                                                   

What do I know? I'm just a paranoid blogger. 

You don’t have to take my word for it. In 2006, brainiac neurologist Dr. William A. Sibley won a fancy prize for his research showing the influence of infections on MS relapses. His work proved that up to one-third of MS attacks follow a viral upper respiratory tract infection (that’s colds and flus, bitches).

One-third. 

When I think about the relapses that could have been prevented, I want to barf. 

Colds and flus are a part of life. We have a whole season dedicated to them. But the situation doesn’t have to be as bad as we let it. We live in a culture that values work over well-being, and showing-up over shutting-down. Between our obsessive work culture and out of control FOMO, we’ve convinced ourselves there’s something noble about ploughing through when we’re under the weather, regardless of how this might impact other people. Are we insane?

If you're coughing or sneezing, put on a Hazmat suit or just stay home.

Obviously, the answer for me is to live alone in a castle with a moat full of dragons. But that seems expensive, and unlike Hughes, I have no desire to completely withdraw from society, cootie-ridden though it may be. It’s December. Party season. And I intend to make merry. In fact, The Banker and I are hosting a holiday bash next week. But there won't be any making out under the mistletoe, and no, you may not have a sip of my drink. If you are lucky enough to be on the guest-list, there will be a bouncer at the door, disguised as a triage nurse, who will take your temperature and give you medical clearance before letting you in. 

So, wash your hands, don't touch your face, and wash your hands again. This holiday season may the only things we spread be joy, love, and cheer. And if you are coughing, sniffling, or sneezing, please stay home. 


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11.17.2017

Why Should I Love The Sound Of My MS?

I love my Mountain Equipment Co-op down-filled booties. Made for campers and people who like, go outside, these booties are built to travel from tent to fire in the middle of the night. And, I guess that’s practical for some people, but let’s be real. Even without multiple sclerosis, I'm never sleeping on the ground, and my fireplace turns on with a remote, the way God intended. I have no business even shopping at a place like MEC. I mean, I’m not exactly sure what “outdoor recreation gear” is, and until recently, didn’t know that Co-op means you have to become a paying member if you wanna buy anything. Is MEC a cult or something? 

I don’t speak hippie. 

Fortunately, the membership was only five bucks, and I didn’t have to pledge allegiance to Gaia, or trail mix, or my favourite rock (it’s diamonds). Shopping on-line meant I didn’t have to reveal my city-girl attitude and complete lack of belonging either, which was great, because, I NEEDED these booties. 

MEC’s whole mountain climber marketing strategy is way too narrow anyway. I wear these extreme slippers in my loft apartment all day and all night, 12 months a year. Because, even in summer, my particular brand of MS means that the blood only kinda flows to my feet, and this is the best, and cutest, solution I’ve found for keeping my toes from certain amputation.

Recently though, I’ve begun to question my devotion to these beautiful booties. More and more, I’m dragging my right leg along behind me. I struggle to get it off the ground at all, and it’s fine if I’m wearing socks, but when I’m wearing the beloved booties, there’s a heavy whooshing sound that happens as I drag my foot across the floor. Like the sound of a slow-moving villain in a classic horror movie, it has become the soundtrack to my demise. 

You can put down the megaphone, MS. I hear you loud and clear.

My formerly invisible illness is not only visible, now. It’s audible too. 

Balls.

And, here’s the kicker (if only I could kick). I fucking have to learn to love this sound, to be grateful for it, even. Because who knows how much longer I’ll be able to make it?

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11.14.2017

Ever wondered if you have other diseases?

Recently, Tripping On Air was recognized as a Top MS Blog by Healthlabs and that was super nice of them, but it’s good news for you guys too because, they’re giving TOA readers 10 FREE Comprehensive Health Test panels, where you can find out cool things like, your blood type or whether or not you have anemia. Non-Trippers shell out a whopping 99 bucks for this kinda intel. 

Cool. But, is there a catch? You have to be American. 

What? That’s not fair! Relax, hosers. Canada already gets this for free. 

So, if you’re in America and you wanna find out about your lipids and your liver function, call 1-800-579-3914 and ask for your free comprehensive health test panel. You don’t need a doctor’s referral, you just need to name drop Tripping On Air. They will hook you up with a lab nearby where you can provide your blood sample. You’ll get results by email a day or two later. If you’re one of the lucky 10, lemme know how you made out. Don’t like, tell me how your kidneys are functioning - that’s confidential. But I'd love to hear how their service was. 

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11.01.2017

Dumb Things I Did Last Week In Defiance Of MS

Last week I decided I wanted to go to the seriously spooky, grown-up haunted house Legends of Horror at Casa Loma, Toronto’s gothic revival mini-castle that sits just up the street from where we live. For most of October, we could hear the terrified screams of visitors to the exhibit from our balcony, and I wanted in. I had an inkling that this indoor/outdoor 2 kilometre ghost-walk wasn’t maybe the most accessible activity in town, but I ignored that inkling and bought tickets anyway. 

The day before we were set to go, I went back to the Legends of Horror website just to see how prepared I needed to be. I read something advising guests with “physical ailments” not to participate. That seemed a little too broad and ignorant for me, those of us with so called “physical ailments” not all sharing the same limitations or abilities. Plus, they also said it was “not ideal” for pregnant women, which lead me to seriously question what kind of person was making the decisions about who should and should not participate in what’s really just some interactive theatre. 

You think you can stop me, MS?

I emailed the venue to get some intel, and was promptly told the exhibit is not recommended for walker or wheelchair users; that there were some stairs and tunnels. This still wasn’t very specific. Like, just how many stairs are we talking about? Note: Sometimes people with mobility aids can do a few stairs.

I was conflicted, and not really sure if this would be too much for me, but the thought of sitting at home with Halloween FOMO while my friends were out having fun, was too much to bear. And since I don’t have a walker or a wheelchair (I have a rollator and a transport chair), technically, the suitability information provided didn’t apply to me. Let’s do this.

The Banker suggested we bring Optimus Prime my convertible transport chair; that I walk as much as I was able; that he would push me as needed, and carry OP up any stairs we might encounter. Problem solved. I emailed the venue with my awesome new plan, and asked again just how many stairs we were talking about.

This is what they said:

“I would still suggest that is Not a good idea to carry that up and down the ‘uneven terrain’ that is part of this Legends of Horror experience.”

Aside from the callous reference to Optimus as “that” (rude), this was GREAT NEWS. “Not a good idea, is not a hard no. And those quotation marks around uneven terrain? That was enough to convince me that the terrain might actually be pretty even. Grammar matters, people. Plus, they never did answer my question about how many stairs there were, so I decided it was two flights. Two-and-a-half, max. It would be difficult, but I could swing it. Because here’s the thing Casa Loma doesn’t seem to get: People with mobility aids have a whole spectrum of ability. Not all disability is the same, and it’s not cool to just decide something isn’t available to everyone. Just give us the facts, and let us figure it out for ourselves. 

The night of the show, we bundled up and got ready to get scared. We rolled up to the venue, and a visibly alarmed ticket-taker took one look at OP and said, “Uhm, this is one-hundred-percent not accessible”. I was like, “Whatever. We’ll figure it out”.

And we did. In the end, it was like, 15 flights of stairs, in the dark and under a fog machine.  And what took most people an hour, took us well over two, plus a lengthy break at the bar at the midway point. It was actually completely unreasonable for me to have attempted this. 

And I’m so glad I did. 

In a disease where decline seems inevitable, it’s hard not to measure the passing of time by a yardstick of things I can no longer do. Anything in the grey area of what might be a little too tough or even reckless, forces me to say to myself, “If not now, never”. 

So what? It’s just a stupid haunted house. (It was not stupid, it was freaking amazing.) A fun night out with friends doing something a little different, is an experience most take for granted. But there’s this feeling I sometimes get when I’m most aware of MS insidiously creeping up on me, and chipping away at my options. It’s the bittersweet realization that I’m doing something I'll never do again. It's the unspoken knowing that, this time next year, I’ll not be physically able to do whatever it is I’m struggling to do this year. Experiences take on added meaning when you realize:

This is the last time I’ll do this. 

I didn’t think this haunted house thing would turn into a bucket list accomplishment, but I woke up the next morning feeling satisfied I’d experienced something unique and cool, and like I’d kicked some ass, those stairs being way scarier to confront than the wailing banshees and severed heads trying to spook us at the castle. My ill-advised night out was a kind of Fuck You to MS.  

I must thank The Banker who dodged zombies to haul OP up and down all those steps like a damn hero. And thank you to my squad of patient friends, Trace, Lisa, Chris and Peter: I realize it’s extra terrifying to slow-walk through a graveyard. Thank you for not handling me with kid gloves; for not trying to talk me into the cautious, reasonable, thing, and for supporting my choice to keep bulldozing ahead, even when it seems really fucking stupid.


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9.21.2017

Ten Secrets I'd Tell My Newly Diagnosed Self About MS

If I could travel back in time to when I was 23, and newly diagnosed with multiple sclerosis, the first thing I would tell my younger, stupider self would be to, "Pour one out for those cargo pants. You don’t need pockets on your knees. You have, like, 16 bags." 

And Younger Me would be like, “What’s with all the rips in your jeans? Are we poor in 2017?” 

And Future Me would clap back, “Nice chunky highlights, cough”.

And Younger Me would be all, “Your eyebrows? Are enormous. Is there a muppet trend happening in the future?” This would go on for awhile until we both realized that neither of us could win; our bitchiness being perfectly matched.

After we’d hugged it out and established a shade-throwing cease-fire, Future Me (grown-up, classy and chill), would re-introduce myself to Newly Diagnosed Me (naive, mouthy and hysterical), as the devastating illness expert I’d so desperately needed when I’d first heard the term MS. Here's how it would go down:

Newly Dx'd Me: What the hell is going on and why did this happen? WAIT. Is this because I…

Future Me: No, idiot. You did not bring this on by hosting a wine-soaked Halloween séance. The sudden blindness you went through two weeks later was not God’s punishment for casting a hair-loss spell on your crush’s girlfriend. Trust me. I checked with Science. Sometimes bad things happen to bitchy people, and it’s just a coincidence.

Secret #1: MS is not your fault.

Newly Dx'd Me: I can't stop freaking out. What’s wrong with me?

Future Me: Okay, well, what’s wrong with you is a terrible fucking disease, so your reaction is actually pretty reasonable. Take some ugly dishes to the alley behind your apartment and smash them on the ground. This is a dividing line in your life between before and after. Your old self is dying and how you saw your future has completely changed. Grieve. Get it out. 

Secret #2: You don’t have to pretend MS is NBD.

Newly Dx'd Me: Okay. Now what? 

Future Me: Finish your meltdown and get ahold of yourself. You need to find a new apartment because your neighbours saw you wigging out in the alley.

Newly Dx'd Me: Thanks a lot.

Future Me: You’re welcome.

Newly Dx'd Me: Anything else?

Future Me: Yeah, stop eating canned ravioli and drinking vodka lemonades. Stop buying bags and pay your student loan. Quit making your mom shake off the MS clinic and answer their calls. Spend at least as much time finding the right doctor as you would finding the right pair of shoes. 

Secret #3: Get an MS specialist who isn’t condescending. Get on treatment ASAP.

Newly Dx'd Me: What’s gonna happen to my job?

Future Me: If you wanna buy yourself some time, maybe don’t tell your boss right away. There will be changes, but, the people who can tie their identities to their employment don’t have to do anything to figure out who they are beyond that. They never have to ask themselves, "Who am I without this soul-sucking job that I hate career that I worked so hard for and am passionate about?" Indulge in your identity crisis, then go find a purpose or two. 

Secret #4: Don’t let other people tell you who you are.

Newly Dx'd Me: I won’t be able to do all the things I used to.

Future Me: It’s true, you won’t. I’m not gonna tell you nothing changes, but I can tell you the best is yet to come. That said, don’t bother showing up to your driving test next month. Get a metro pass and move on. Despite what your mother told you about ‘bus people’, it’s not as bad as you think. Plus this thing called ‘Uber’ is coming. 

Secret #5: You are adaptable. You get really good at needles.

Newly Dx'd Me: Needles?! What else?

Future Me: You’ll no longer describe an ‘awesome weekend’ as one where you spend all of Sunday chewing on anti-nauseants and sipping ginger-ale while your best friend barfs out her hangover in the bathroom at brunch. This is just personal growth. This will be hard to believe but: 

Secret #6: Not everything is about MS.

Newly Dx'd Me: Ok, but what the fuck can I do to make this better?

Future Me: First, of all, stop saying fuck.

Newly Dx'd Me: What? 

Future Me: Just kidding. But seriously, stop eating canned ravioli, and drinking vodka lemonades. Maybe do a few sit-ups. Go outside.

Secret #7: Control and manage the things you can. Exercise. Sleep. Vitamin D.


MS is bossy.

Newly Dx'd Me: Why bother? My future obviously sucks.

Future Me: MS is hard, but your future doesn’t suck. Just look at our future hair. And we traded the orange apartment in Steel Town for a loft near a castle. The girlfriend spell didn't work exactly as planned, but we married that crush. Those raccoons that were living on the fire-escape? They’re dead. Now we have a dog. 

Secret #8: You don’t always have to be grateful things aren’t worse, but you still have a lot to celebrate. 

Newly Dx'd Me: Fine, cool hair, but is that a lazy eye? A walker? Are you effing serious?

Future Me: It’s called a rollator, and it’s name is Optimus Prime. He helped you get around Spain. Show a little respect. 

Newly Dx'd Me: Ooh, Spain?

Future Me: I’ve said too much. The point is, you’re smart and capable and resilient.

Newly Dx'd Me: You forgot pretty.

Future Me: Obviously.

Secret #9: Most of the time, you can handle this.

Newly Dx'd Me: Most of the time?

Future Me: Every now and then you lose your shit, and are impossible to be around. And yet...

Secret #10: Your best friends and family are there to carry your shit, to drive you places, to listen to you freak out, to help shoulder this impossible burden. When you think you can’t deal anymore, you give it to The Banker, and his faith in you is enough to restore you; to remind you that you are not alone.

Newly Dx'd Me: I guess, maybe I can do this.

Future Me: You can. You do.

Newly Dx'd Me: Okay, so if you’re from the future, what about lottery numbers, or stock tips?

Future Me: I dunno, I wasn’t really paying attention. Computers?

Newly Dx'd Me: Seriously? Fine. I’ll just take my three wishes then.

Future Me: OMG. Stop touching my belly. I’m not a fucking genie.  



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8.27.2017

The 5 Frustrating Ways Lemtrada Didn't Cure Me

I finished round 2 of Lemtrada 15 months ago and last week I was asked by MS OnetoOne, the mandatory support program for Lemtrada users, for feedback as to how this drug has made a difference in my life. Until now, I’ve hesitated to write about my experience but they promised to throw in a $25 gift card for my trouble so, clearly the universe is telling me it’s time. 

I know what they’re looking for, with their flashy prize money. Now that my treatment is over, they wanna hear about how I went from having a life ruled by disease and disability to one where I almost forget I have MS. They wanna hear how I went from laying around all day watching Golden Girls, to hiking the Himalayas and crossing shit off my bucket list; that I ditched my old lady aqua-fit friends because those blue-haired bitches were holding me back. 

Now I teach dolphins how to swim. 

This is not that story. I would never ditch Myrtle. And dolphins are jerks. But I really want that vague gift card (please let it be 8 bags of Miss Vickie’s chips), so I’m hoping my less-than-miracle story still qualifies. 


How Lemtrada has changed my life


My Hair
The biggest and most noticeable change is that I have blond hair now. Obviously. I mean, it’s the first thing anyone who hasn’t seen me in awhile notices. It’s possible that “OMG you’re a blond now!” is more socially acceptable than “OMG you’re using a walker now!” but I like to think the walker isn’t all that noticeable. 


that hair tho


My grades are higher
When I started Lemtrada my EDSS was one whole point lower. I was walking with a cane, some of the time. Now I’m using a walker/rollator all of the time. Too bad MS is opposite world where things like ‘progress’ and higher EDSS scores are not going to make me an honours student. 

Secondary Autoimmunity
Lemtrada straight up murders your lymphocytes and 15 months after round 2, mine are still a little afraid to come back. If you have an autoimmune disease, your lymphocytes are your best frenemies who can’t decide if they wanna kill you or save you, so they do both. You need those two-faced, back-stabbing lymphies to keep your immune system in check, so while mine are still low, I almost always have a UTI and if you sneeze within earshot, I will treat you like the leper you are. But exposure to Lemtrada opens you up to way more risks than just the flu (just the flu? I'd rather have herpes). Some risks are known, like thyroid disease and actual herpes, but since this drug is still new, others are a surprise, waiting to be discovered. Like the one I developed that has sent me to the ER several times and requires me to see a whole different kind of specialist. 

New Friends
Lots of people on Lemtrada make new friends during their infusions or through online forums. Personally, I’m on a first name basis with the nurses at the lab where I’m required to have a donut and a full blood work up once a month for the next million four years. There’s also my MS OnetoOne friend who emails and calls, uhm, a lot, to remind me to get this work done. I mean, I thought she was my friend. She asks a lot of super personal questions but gets wierd when I ask her the same. One time I didn’t call her back or answer her email and I guess she thought I was ghosting her cause I got a crusty, collection-agent style letter. Priority courier. She’s intense. I’m gonna stay on her good side and get my labs done on time, just in case. 

I have to explain myself way more
‘Wait, didn’t you get that beast of a drug that was supposed to stop all this shit?’ is a question I get a lot. Annoying. I’m constantly explaining that it didn’t work that way for me. Then I get to answer questions like ‘Why don’t you just get HSCT.’ Cause it’s not that fucking simple, Brian.

OnetoOne asked for what’s different but maybe the good news is what has stayed the same. My MRI’s are unchanged. In the 27 months since my first treatment, there's been clear progression from old disease but there’s been no new inflammation. I haven’t had new attacks and I should accept that as a good thing rather than simply seeing it as confirmation that I’m fully SPMS. We’ll never know if things would have been worse or what kind of lurking inflammation may have been shut down. I don’t regret my decision to deal with the devil - I think I’ll always be willing to assume considerable risk for the possibility of being a little better. Lemtrada is an amazing drug. It just wasn’t my amazing drug. And while I’m pretty sure my story won’t make it to the manufacturer's marketing materials, it’s important to tell all the stories, because we are far from conquering MS and there's still a lot of work to be done.

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