Trying a New MG Treatment

Dealing with myasthenia gravis is one of the hardest things I have ever dealt with. To be exact, it almost makes motherhood feel like a breeze. I will say that the easiest part of dealing with my diagnosis is having a neurologist who understands myasthenia gravis, understands that all of us patients are not the same, and finally makes talking to so easy!

Addressing my treatment plan

On the morning of March 15th, 2025, I was dreading the drive to Atlanta because let’s face it, who actually likes driving into Atlanta? Not me! But I also knew all my concerns in regard to my treatment at the time would be addressed and it would be one less stress on me.

As I sat in the waiting room talking to my mom, who is my emotional support person, I was worried if were ever going to get called back because I was freezing. Once we got to the back and settled in it was just a matter of time until I knew I could put my worries behind me and figure out what my best options moving forward would be.

As always, we started with the basics, MG-ADL score, the basic MG stretches, we started the conversation on how I was feeling on my current treatment regimen. I immediately expressed my concerns about how I felt I had hit a plateau and was no longer getting any meaningful progress from the current regimen. We went over my other health impairments and any changes or anything in regard to them.

She immediately mentioned Ultomoris and went over how she seen positive changes in her other patients, she talked about side effects, then broke down how the dosaging worked, and all the important stuff.

A treatment that led to more freedom

My first thought was positive because let’s face it I have three kids, one being a toddler! I had a little more timing in between each treatment. I no longer dealt with every other month which was still good, but after the initial loading doses, I wouldn’t have to worry about the next for another eight weeks! That was great because again there was more freedom in the long run, and shorter infusion time.

So, I wasn’t tied down too long and could still mother and deal with everything else, especially being in my final class of my associate degree. The only negative I could wrap into my brain was the fact I would have to get extra immunizations! Despite kids and several tattoos and piercings I have a very deep fear of immunizations and needles.

"Let's do this!"

So, I did one of those quick flash forwards in my head and realized this was ultimately my life and my kids having their mother in their life! I immediately told her to “Let’s do this”! She sat down and explained a little bit more that before I could start, I would have to get an updated round of both the Meningococcal vaccine part A & B simply to keep me protected as a precaution.

She also explained that I needed to stay on my current regimen until the shots were completed. She explained that after the initial loading dose and a repeat two weeks later, future infusions would occur every eight weeks.

Ultimately, I left out of her office feeling confident that she had me moving forward in a positive direction and had my best interest at hand. I believed she heard my concerns and I believed she understood that I was tired of hitting plateaus. I simply wanted to continue moving mountains even if it is only a centimeter at a time, some progress is better than none at all!

Needless to say, here I am eight months later, four infusions in and I have noted small but remarkable improvements I hadn’t seen or felt yet. I do not regret my decision to switch to Ultomoris under any circumstance, even with the extra 5 vaccines I needed!