I appreciate your vulnerability in sharing your story. As someone who is only seven months into the DMT song and dance, I recognize the fear and frustration. I am intimately familiar with the limitations that the medical system has in serving patients, especially the complicated relationship between insurance, medication, doctors, and other medical providers. I am big believer in the power of medicine and life style changes combined, even if the science isn't there to back up the impact a healthier lifestyle on MS.
I encourage anyone who is looking for the latest science available on MS, plus LOTS of great anecdotal experience to check out /r/MutlipleSclerosis on Reddit (https://www.reddit.com/r/MultipleSclerosis/). There a FOUNTAIN of knowledge and a lot of people deeply passionate about helping others - also a lot of folks sharing their challenges, which can be hard and scary. It's a community that has given me some peace and support as I navigate the world with my relatively new diagnosis.
My doctor recommended being on an aggressive DMT, specifically Ocrevus or Briumvi. There are studies that show the long term impact of these drugs makes a big difference. As you noted, there are risks. The cancer risks are real. It does deplete your B cells, but I've found the side effects to be pretty manageable. I feel tired for the day after my infusion, but it's nothing too crazy. I have made some lifestyle changes alongside the medication because I do philosophically believe the best way to fight MS long term is to improve my overall health and wellness. I, too, have been faced with larger than life stress since my diagnosis. I credit my ability to make it through that unbearable stress without any MS flares to my DMT. For me, the fear of losing my vision or physical independence (or any of the other things related to my nervous system) will keep me on a DMT until there is a cure for this disease.
Thanks so much for reading and for sharing your story as well. Vulnerability can be uncomfortable, but worth it for connections such as this. 💜
I didn't think of using Reddit, thanks for that information, I'll be sure to check out the link that you provided!
And yes, stick with the combo, I also think it's the best bet, especially early on. It took my body a while, about 5 years, to "calm down". Even with the lifestyle changes and medication.
Wishing you the best as you manage your diagnosis! Happy to connect if you ever need an ear.
I appreciate your vulnerability in sharing your story. As someone who is only seven months into the DMT song and dance, I recognize the fear and frustration. I am intimately familiar with the limitations that the medical system has in serving patients, especially the complicated relationship between insurance, medication, doctors, and other medical providers. I am big believer in the power of medicine and life style changes combined, even if the science isn't there to back up the impact a healthier lifestyle on MS.
I encourage anyone who is looking for the latest science available on MS, plus LOTS of great anecdotal experience to check out /r/MutlipleSclerosis on Reddit (https://www.reddit.com/r/MultipleSclerosis/). There a FOUNTAIN of knowledge and a lot of people deeply passionate about helping others - also a lot of folks sharing their challenges, which can be hard and scary. It's a community that has given me some peace and support as I navigate the world with my relatively new diagnosis.
My doctor recommended being on an aggressive DMT, specifically Ocrevus or Briumvi. There are studies that show the long term impact of these drugs makes a big difference. As you noted, there are risks. The cancer risks are real. It does deplete your B cells, but I've found the side effects to be pretty manageable. I feel tired for the day after my infusion, but it's nothing too crazy. I have made some lifestyle changes alongside the medication because I do philosophically believe the best way to fight MS long term is to improve my overall health and wellness. I, too, have been faced with larger than life stress since my diagnosis. I credit my ability to make it through that unbearable stress without any MS flares to my DMT. For me, the fear of losing my vision or physical independence (or any of the other things related to my nervous system) will keep me on a DMT until there is a cure for this disease.
Thanks so much for reading and for sharing your story as well. Vulnerability can be uncomfortable, but worth it for connections such as this. 💜
I didn't think of using Reddit, thanks for that information, I'll be sure to check out the link that you provided!
And yes, stick with the combo, I also think it's the best bet, especially early on. It took my body a while, about 5 years, to "calm down". Even with the lifestyle changes and medication.
Wishing you the best as you manage your diagnosis! Happy to connect if you ever need an ear.