After a Year, I Know Best. (I Think.)

It's amazing how quickly a year goes by. There are moments that creep, stretches of a week or a month that seem like they'll never end, but then suddenly it's New Year's Eve and once again we're welcoming a new end-digit to the 'date' portion of our medical paperwork. 

Just over a week ago I hit the 1 year mark since my diagnosis. Even now I pause as I think of how to describe that day; celebrated 1 year? Mourned the 1 year mark? The day itself didn't feel like anything monumental that I needed to mark; there were so many more significant days that happened since the last February 6th, both medically and otherwise. In the last year I've seen 3 neurologists, had 6 MRIs, gone on steroids 3 times, completed my first 2 rounds of Ocrevus, gotten prism glasses, and started an incredibly helpful baclofen routine. I've also completed an elite professional training program, started my dream job, moved to a whole new state, and bought my first home with my husband. For every MS-related moment there was an equally-significant moment that had nothing to do with my disease; the balance is a strange one, but life must go on. 

Now obviously with a move came a switch to a new neurologist; the switch was frustrating as I felt 100% confident in my hometown doctor, and I was settled into an understanding routine with her where we were making decisions together and I trusted her implicitly. I felt fine with my new neurologist until lately, when after a GREAT MRI scan - no new lesions and old ones had shrunk or nearly disappeared - he put on the table that he wants to switch my medication from Ocrevus - largely thought to be the best on the market right now - to something 'less potent.' His logic was that my 'disease is mild' so I shouldn't be on a drug so intense. My thought? WHY on God's GREEN EARTH would I SWITCH MEDICATION when the one I'm on is obviously working, causing me 0 side effects, and I only have to take it every 6 months?!

Accurate representation of me listening to the voicemail from my neurologist saying he wanted to talk about a med switch at my next appointment

This situation has put me in a weird headspace; not only did the suggestion that I switch medications throw me for a loop, but this is also coming after 3 weeks of flared up vision symptoms that I've previously had successfully addressed with steroids while this new neurologist insisted I didn't need them...needless to say borderline begging for steroids for nearly a month doesn't leave you in the best mood. (I eventually got my way and guess what? Problem largely resolved with steroids like it did last time - it's amazing how the patient usually knows their body best, isn't it?) All that to say, it's making me question who the expert in the situation is. Is it the neurologist with his years of medical schooling, fellowships, residencies, and specialty training? Or is it me, the patient living in the body that's waging a war on itself and surprising me with new symptoms at random? 

This is a prime example of the balance that needs to exist for a doctor-patient relationship to be successful. The doctor needs to be willing to use and present their expertise so that the patient is well-informed and can make educated decisions. But the doctor also has to listen to the patient and be willing to take their decision as the end of the line - at the end of the day, the power truly should lie with the person whose body is at stake. (At least that's how I see it.) Part of why I had so much respect for my hometown neurologist is that she was not only incredibly knowledgeable, but she shared that knowledge with me freely and also directed me to resources that would provide me additional, possibly different, but equally reliable perspectives. However at the end of the day, decisions were always mine. When I was choosing my medication I initially didn't want to do an infusion; I found that prospect extreme and intimidating. Dr. Pocsine explained why Ocrevus, an infusion, was in her opinion superior to other available treatments, and went over the pros and cons of all the medications that I could safely take. (JC positive life rules out quite a few - bye Tysabri!) She gave me the information and quite literally said to me, "This is what I recommend but at the end of the day it is your decision and we will do what you feel comfortable with." BINGO. Dream doctor line right there! They bring to the table their knowledge, but they should never take from it your power.

So tomorrow is the big follow-up appointment with my neurologist. Quite frankly unless he makes a groundbreaking argument for switching, I'm going to firmly insist that I will be staying on Ocrevus. At the end of the day, it's working, I feel safe being on it, and the reasoning behind starting me on it by my first neurologist is something I'm confident in. If he has an issue with that I'll be on the hunt for a new neurologist, and that's okay too - in the long run I'd rather put in extra effort to be 100% confident with the team I have behind me than be unsure about the approach of my lead medical professional. I may even go back to working with my original neurologist from a distance if I can find a way because with MS, where you can find comfort you should always take it. 

If anyone has had similar experiences or has tips for standing your ground with medical professionals, I'd love to hear about them in the comments! Similarly, if you work with an out-of-state neurologist or other professional, it'd be great to hear about that as well. Stay tough MS-ers, and don't be afraid to stand up for yourself. If you're struggling with holding your own against highly-educated and experienced medical professionals, or feel like you don't have the knowledge to disagree with them, I strongly recommend reading this article, particularly the last section:

Make the Most of Your Doctor Visits