Kim

And I was struck at the time that he was just so optimistic about what my prognosis would be and said that he didn't expect it to change my lifestyle at all. It shouldn't impact my career trajectory, shouldn't get in the way of anything that I want to do with my life. And he also said that he was optimistic that there would be a cure within my lifetime, which at that point was a really nice thing to hear. Who knows, right? We can never tell, but I guess the research has come a long way. 

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My first appointment with the MS specialist was so useful. I heard that message exactly, that this disease used to be a disabling death sentence, and it is no longer that. And if I had known that from the start, it probably would have saved me some panic.

My mother is a physician, and she showed up at the hospital. She’d been talking to me throughout this process. And I was asking her for advice on what I should do, and she showed up just kind of in that window of time between when I had read the report and I found out that MS was the front-running theory and when the neurologist actually showed up. 

So, there was a few hours in there, and she showed up in the middle of that, and so she was a really strong support. And then the following day, my father came, who is in [LOCATION], so an hour away from where I live now, which I haven’t mentioned where, sorry. And we went out to brunch altogether after my first dose of steroids when I was allowed to leave the hospital, or late brunch, and then went back to my apartment at the time and kind of just talked. 

It was me, and my mother, and my father, and my girlfriend, and then another one of my classmates who I was really close with and had been a big support during this time and just talking about recapping everything the neurologists had told me so far and what the plan was going forward. And there were a lot of tears by all at the time. And my father’s a musician, actually. He plays trumpet professionally. And he took out his trumpet and played a really emotional song, and that prompted a lot more tears.

So, the attending neurologist seemed pretty confident that this was the diagnosis for me, that that was what was going on. And because there was evidence of an active flare, which means there's active inflammation in my brain and spinal cord which was directly causing my loss of temperature and pain, she suggested we do a five-day course of very high dose IV steroids, which is the recommended treatment for an active flare. And she described to me that the IV steroids are effective at kind of shutting off the active inflammation but not necessarily repairing what damage was already done. So, they're good at kind of preventing things from progressing, but they aren't going to immediately take away what damage there already was, and my body might repair that, and it might not, and that's kind of a thing that we just need to wait and see, which, at the time, I felt like that's not exactly what I want to hear, but OK. And then she suggested that I stay in the hospital for the five-days to get the doses of IV steroids, and I felt pretty strongly that if I could do this from home and then go into the hospital for the steroids and then go home again, I'd much prefer that. So that's what we reached a compromise, and I stayed in the hospital for one more night and got the first dose, and then I went back and forth for the next four days. 

The recommendation was also for the Ocrevus©, which is the medication that I decided to take. 

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 So, for the first infusion, they break up the first dose into two infusions instead of giving you the first dose all at once, and those infusions, I believe, were two weeks apart from each other, and that was just to make sure that your body doesn't have an infusion reaction or react poorly to this new medication. So, I sat in the infusion center, and they asked me some questions about how I've been feeling, and they gave me some Benadryl© and a smaller dose, a much smaller dose of oral steroids, and then kind of let me sit with the Benadryl© and oral steroids for about a half an hour, and then they got the infusion started, and I really didn't feel much at all with it. It was kind of cumbersome because I had to sit in this chair for hours and hours. By the end of the day, I felt pretty tired, and my face had lost a little bit of color. I looked pale when I looked in the mirror. But besides that, I felt pretty fine with the first infusion. I didn't have any reaction at all. At one point in the middle of the session, my head got really itchy, and so I scratched it a little bit. And I'm like, maybe this is coming from the drug. I'm just going to not scratch and hope it goes away, and then it went away. And then the same thing with the next dose that was a couple of weeks later.

So, I settled on, again, on that medication, the Ocrelizumab, and then we set up a first infusion at my home institution a few weeks later, and it took some time because it's an incredibly expensive drug. This new monoclonal antibody and all these cutting-edge medications, they are quite pricey, so it took a while to get the insurance to cover it.  And I was fortunate that the Multiple sclerosis department at my home hospital had a person who's dedicated-- her role and responsibility was to get this drug approved for patients or to get drugs approved for patients, so she really went to bat for me and did a lot of that work behind the scenes so that I didn't have to, which I think is wonderful because I don't know if I would have had the knowledge to navigate that system. It's pretty complex.

The person who first made the diagnosis who was the neurologist that saw me in the emergency department was not an MS specialist. I mean, she was very nice, too, but I'm glad that I have MS specialists to see. For me, it's just like someone has dedicated their career to this disease, and it's nice to know that they are really knowledgeable, and they know. They have seen many other patients in different trajectories and can use all of that experience towards my care. So, I think I'm really fortunate to have them on my team.

Identity affects the way people treat you and the way they might try to diagnose you if you've thought about those experiences and your identity in relation to your experiences.

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Yeah. I think that I'm really lucky, again, because, as an insider, right, I'm in the medical system, the hospital that I study at is going to take what's going on with me pretty seriously. So, I got the full workup right away after ignoring these symptoms for a week, right? When I went into the hospital, I had a diagnosis 24 hours later, and I think that's pretty rare. And I think about that a lot, that it's a big privilege that I am a part of the system and that it helps me with my care. So, I don't know, it's a tough question, that I think it can be really challenging to be taken seriously with these sometimes pretty subtle neurologic things like, “Oh, my foot's tingling a little bit. It hasn't always done that. Maybe it's nothing. Can you look into it?” And they're like, “No, it's nothing. You're fine.” So yeah. I don't know if I have too much more insight, except for the self-realization that, my case, I was really fortunate.

I've always been a physically driven person, and I really like the outdoors, and I like to rock climb and run and be active all the time, play ultimate frisbee. And so, I wanted to immediately make sure that I could still do those things or push myself to still do those things to the best of my ability. So, in the weeks directly following my diagnosis when I was still dealing with the pain and temperature loss, the rock-climbing gym that I'm a member of at that time had just started the mile high challenge which is, over the course of that month, the goal is to climb a vertical mile in the rock-climbing gym, and you track all of your climbs. And if you climb the vertical mile in a month, you get a t-shirt. And I had been kind of halfway through the vertical mile when I was diagnosed, and then I didn't climb for like a week and a half because I was in the hospital and getting the steroid infusions. And then the first thing I did was like, I need to go finish this. I want to see if I can finish this thing. And I remember being really frustrated in the gym because I felt like my left leg wasn't doing the things that it would normally do. I couldn't trust my toe to hold me on certain foot holes on the wall, and I kept slipping off things that I felt like I wouldn't normally slip off on, but I did finish that vertical mile, and I got my t-shirt, and I wear it all the time. So that felt like a thing that was really important to me right off the bat. I started this challenge, and I don't care that I have MS now. I want to finish the challenge that I had already started.  

The people that I run with, when I was training for the MS team, all the other runners were either people with MS or people with direct family members with MS.  So that was nice because it was just like this little community of people who had been impacted by this disease in some form or another. And we never talk-- we didn't really talk about what our experiences with MS were. We just kind of shot the shit and ran together, and it was nice to have like a community of MS people with MS not being the main focus.

I go through periods of my life when I meditate more frequently and periods when I meditate less frequently, but I feel like meditation is wonderful and helps kind of, I don't know, quell the internal brain thoughts when my mind is going a mile a minute and I can't stop thinking about MS things. The meditation can be really nice from the emotional standpoint to just help me clear my thoughts. That's about it.    

And as time has passed, I think I've kind of accepted it more, and I think it's become a thing in my tool-belt, especially as a medical professional, to have this perspective of what it feels like to be on the other side of the patient room being told the difficult diagnosis and knowing exactly what it feels like to receive it, and it's kind of given me this perspective that I didn't previously have. But again, it's never that simple, and I think, even in the regular day now, there are times where it feels like a big burden to have this diagnosis and times where it feels like this is something unique about me that I now have, and it sets me apart.  

That's one of the things that in my reframing I think has changed a lot. I think that you can never really predict what's going to happen to you in life, and me being diagnosed with MS is a perfect example of that, and I think you have to deal with the curve balls that life throws your way. And for me, MS was a big curve ball, but it kind of has made me focus on the things that I do have control over and the things that I don't.  So, I have control over a lot of elements of my life. I have control over the way that I approach my disease. I have control over whether I'm going to go to see my neurologist every six months and whether I'm going to take the medications that they prescribe to me and whether I'm going to take the vitamin D and if I can exercise. Those are things that I can directly control, and it's comforting to know that some of those things will hopefully lead to positive outcomes in my life, and so I keep doing them.

I wish that from the start that I had known that if you have to be diagnosed with the neurodegenerative disorder, MS is a good one to get. And if you have to pick a good time in history to be diagnosed with that disease, now is a good time. There are a lot of really effective drugs that are disease-modifying that literally change the trajectory of MS that we didn't have 20 years ago, and they give people a normal life. And I didn't really know that at the time, and so there was a lot of panic. And that's why I think my first appointment with the MS specialist was so useful. I heard that message exactly, that this disease used to be a disabling death sentence, and it is no longer that. And if I had known that from the start, it probably would have saved me some panic.

It's hard because, again, so with MS-- in medical education, every kind of disease has like the prototypical stem attached to it where this is the classic patient that experiences this disease. This is the classic age that they get it that. This is the classic sex of the patient who gets the disease, and you're taught these things in kind of the classic presentation when, in reality, medicine is a complex thing, and nothing's ever that simple.  So, the classic patient who gets MS is a young woman in the 20s, and the classic way they present it is with a visual disturbance. And so, we'd be taught this way of reading the question stem that's like a young woman who's 23 years old, suddenly experiences blurry vision and pain behind her right eye, and you know it's MS immediately. But then it would be kind of frustrating for me because it's like, no, I'm that person also, but I'm not a 23-year-old woman, and I didn't have pain behind my right eye, and my vision is fine. So, there'd be some, again, hey, let me tell you that it's not always this, and look out for other things because if a patient's coming in and they don't have that perfect set of symptoms, they could still have MS, and don't discount what they're saying just because it's not this one particular way that we're taught to process the information. 

My advice would be we're all taught to approach a diagnosis based on the common presentation, and MS is such a broad disease with so many possible symptoms that I think it should be on your differential diagnosis when someone comes in with some weird neurologic complaints that don't necessarily make sense right off the bat. They're probably not faking it. People don't want to come to the hospital unless they really have to and think about MS because I've heard these horror stories of people who have had weird neurological complaints for like a decade, and they keep getting written off by health care professionals and saying, oh, they're probably just imagining it, or maybe it's stress, and then it ends up being a mess. And maybe if they had that diagnosis a decade earlier, there would have been a lot less pain and worry. So, I would, for health care professionals, keep it on the radar, and know that it looks different in every single person.

I would just say the best thing that you can do is just be there, like physically present for the person, and listen, and that everyone's experience is different. And again, the most commonly reported symptom is fatigue, and fatigue doesn't sound particularly medical. It just sounds like you're tired. Go take a nap. But if you're just understanding and present and supportive, I think that that goes a very long way. Just listen to what your loved one has to say to you and don't judge what they're saying, and you don't necessarily even need to give advice. Just listen and believe.