As most of you know, my beloved neurologist who diagnosed me with relapsing-remitting ms on March 14, 2018 retired at the end of the year. He saw me one last time in December 2020 to see me off properly and set up me up with another neurologist at UCLA with whom he thought my family and I would get along.
So, this February, I met with my new neurologist. My fiancé and family came along for the appointment to support me and get to know him, as well. It’s important that everyone is on the same page about my care and in my opinion, the only way to do that is to have everyone go to as many appointments as possible. And this first one is crucial since we are all meeting him for the first time.
I appreciated that my new neurologist was not super uptight about having 4 people with me for my appointment. Once we all got settled, we ran through everything from the beginning so that he could understand my history. So, we discussed my first symptoms, initial tests we had done, the diagnosis process, medication choices and what (if any) additional symptoms I have. He then examined me. I have been examined by a few neurologists now, and they all have a slightly different examination process. Generally, they all check your reflexes, motor skills, sense of feeling, eyesight, and nerve feeling. Lastly, we asked him a handful of questions about his methodology and explained our thoughts on my care, and he was generally on board with everything.
Before my previous neurologist retired, we agreed that I would no longer have contrast with my MRIs, as it is not really necessary when my MRIs are stable, and I don’t really have any new symptoms. My new neurologist agreed to this approach, which I was hoping would be the case. MRIs are only problematic because of the contrast portion, so if there is no contrast, you could really have as many MRIs as possible. However, he said if I have a flare up or new lesions show up on an MRI, we may need to go back to contrast for a little while. Also, he agreed with my position to want to stay on Tecfidera. He has the same philosophy to not fix what isn’t broken. Further, my family and especially my fiancé are really adamant about wanting to do the full hog of bloodwork every 3 months even if it is not fully necessary to just be comprehensive and practice being better safe than sorry. Luckily, he was okay with that, as well. So, overall, it seems like my care will not really be changing very much even though I have a new neurologist now, which I am very happy about it.
Lastly, we talked about the “v” word a little bit since everyone and their mom seems to want one—except my family and me. He told me that the three approved in the US are generally safe, but that it is not clear how effective they may be in connection with my medication and immune system function. He also had said that the AstraZeneca vaccine has actually caused ms like symptoms and ms in some patients. I am very cautious and skeptical of all of them at the moment, but it is a very personal matter. I am just happy my new neurologist was not aggressive or really pushy about it since I really am not interested in getting it right now. I am operating under the wait and see approach.
One issue I have with doctors in general is that doctors are not really on the up and up about nutrition and how what you eat or what probiotics or supplements you take benefit your health and alleviate disease activity. As I have talked about in other posts, I went gluten free at the beginning of 2020 to lessen the inflammation in my body. Whenever I ask doctors about this including my new neurologist, they say it won’t hurt me but they don’t know what positive effects this will have on me. I get the same response when I tell them I take a probiotic every day. All I know is that since going gluten free and taking the current probiotic I take, I have felt better, so I am going to continue to do those things. It would just be helpful if doctors would research this too and know how these choices interact with my medication. I will give my new neurologist credit though because when we spoke about gut health and the effect of probiotics, he was able to say that research has shown that a majority of individuals who have ms have an increased amount of the gut bacteria, Akkermansia muciniphila, in their gut biome. Researchers are now looking into why that is the case and what that has to do with having or getting ms.
From my research, it looks like Akkermansia muciniphila causes increased inflammatory responses. Individuals with ms also have lowered levels of the gut bacteria, Parabacteroides distasonis in their gut biome, and Parabacteroides distasonis is supposed to help with triggering regulated immune system responses and stop inflammatory responses in the body. So, hopefully more research is done here and doctors are prepared to figure out how to regulate our gut microbiomes with certain probiotics. It would be nice if we could figure out a way to increase the gut bacteria, Parabacteroides distasonis, in ms patients, such as myself. I think doing that would help stop ms disease activity entirely.
Overall, the appointment went very well, and my family, fiancé and I all liked him. I will see him again in six months, and in the meantime, I will do my normal bloodwork and have my MRIs done.
Always,
Taylor
