My Relapsing MS Care Team: Finding a Neurologist, a Partner, and My Way By Donnie, Father, Husband, Project Leader, Former Athlete • March 27, 2018
My wife has always been there for me. I credit having a strong support system at home with being able to live a pretty normal life since my relapsing MS diagnosis. I’ve mentioned this before today. In previous posts, I’ve written a lot about my family and the love and admiration I have for them.
But I have other partners in this struggle with relapsing MS who I haven’t told you about: my neurologist and everyone on the healthcare team who works with him. I think it’s true that our relationship has also been essential to me living a successful life with relapsing MS.
In the summer of 2000, I was healthy, in decent physical shape, and very active. I had a great family, a good job, and everything was going according to plan. That was all threatened when I was given the diagnosis of RMS.
When the neurologist walked into my first appointment, I was surprised at his appearance. He did not look like your typical doctor. He was neatly dressed, but he had long hair and a goatee. He wore a necklace, a few bracelets, and also had his ear pierced! He was nothing like me. The first thing I thought was, “I made an appointment with a hippie straight out of the ‘70s! This is not going to last long.” Well, it turns out we have a lot in common. And more than 20 years later, I’m proud to say he’s still my neurologist!
I realized very quickly that I’d found the right neurologist. He was very open and up front, which I loved. We communicated easily. We worked at making decisions together. We even decided on my first disease-modifying therapy during that initial appointment. There weren’t many options to choose from back then, so the decision was less complicated than it might today. We decided on an injection and that medication kept my RMS stable. Eventually, the side effects became too much for me to deal with, so we had a conversation about how I was feeling and decided it was time for a switch.
We decided on our plan and we laid it out to understand what we were trying to accomplish. How we would measure success, and how long we’d wait until an MRI could evaluate the success we were having. Over the course of the next few years we tried several different treatments, but we weren’t entirely satisfied with the results and continued to evaluate and work at finding a better fit for my relapsing MS.
My disability continued to progress and I was frustrated. So my wife and I discussed my options with my neurologist, who always gave us his honest opinion, and he told us about LEMTRADA. I was excited because LEMTRADA had proven that it could reduce relapses and slow disability progression. He also told us about the possible side effects of LEMTRADA, such as infusion reactions and autoimmune events. We were hopeful that this could be the right fit for me.
I knew that my neurologist and his team were well-trained, and knowledgeable, and understood the possible side effects and how to treat them if any happened to me. I then received my second course of LEMTRADA. I haven’t experienced any relapses or disability progression, after taking LEMTRADA. You know, all RMS patients are different, but that is my experience. And, personally, I’m super glad I made the switch to LEMTRADA—I haven’t looked back since!
I am so grateful for the relationship I have with my neurologist. Working together and building our shared relationship of trust has allowed me to participate more fully in my treatment decisions. Now, he is not only my neurologist, but he is also a good friend.
I often hear people describe their healthcare team with love and admiration. But sometimes I hear notes of sadness or frustration when people describe not being listened to or having their feelings considered during treatment decision-making.
These are the kinds of questions you should be thinking about:
How is your relationship with your neurologist? Are you getting all that you can out of your treatment plan? Is there still something you wish was different about the management of your relapsing MS? I encourage you to be honest with your neurologist and start to have a more open line of communication with your healthcare team. You deserve the best treatment and the best medical team working for you.
If you have suggestions for how people can advocate for themselves, please share them with others in the comments below.
- healthcare provider
Happily Ever After
By Donnie, Father, Husband, Project Leader, Former Athlete, October 12, 2017
I’m sure that a lot of people out there have interesting stories about how they met their significant other
My Amazing Family: My Care Partners
By Donnie, Father, Husband, Project Leader, Former Athlete, September 27, 2017
My two girls really can’t remember me before I had relapsing MS. I was diagnosed in 2000 when Brooklyn was 4 and Hannah was 2.
Attend a live event or watch one online to learn more about LEMTRADA.
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