Don't Wait for a Crisis: Why Advocating for Your MG Care Matters

When thinking about symptoms and the medication we take, we often look at our calendars and remember we have a visit in a month, so I won’t bother my neurologist or specialist until then. But what if that mindset is actually causing more harm than good? What if we are ultimately setting ourselves up for failure and potentially a crisis or a long-term major flare up? While yes, medications do take time to properly be able to respond to the body, but after so long we need to speak up and let our specialist know what is going on.

The uphill battle of an early diagnosis

In the early days of my myasthenia gravis (MG) journey, I was just a young 24-year-old mother with an elementary schooler and a six-month-old, trying to work and figure out what was going on with me. When my symptoms first appeared in November of 2016, I was fortunately still young enough to be covered under my mother's health insurance. However, I knew I only had about a year left before aging out to get this all figured out.

Initially, I was seronegative, nothing showed up on MRIs, but I had a positive single fiber EMG and a positive repetitive nerve stimulation test. But that wasn’t enough for my neurologist. He gave me a prescription of Mestinon but even with insurance and my hours at work having to be cut due to these symptoms I still could not afford it all the time. By the time I aged off my mom’s insurance, he still wasn’t content with a MG diagnosis, and he referred me out to Emory, which I will forever be grateful for. My new neurologist was able to see me under their charity care program. From the moment she evaluated me and all my previous test results, she knew without question that I had MG. It is also important to note that after a year, I was finally no longer seronegative but I was testing positive for the AChR antibodies.

Building a partnership with the right neurologist

Over time, my new neurologist and I developed a close relationship and we worked as a team, rather than maintaining a distant doctor-patient relationship. She was very understanding of my financial status and my struggle to afford Mestinon. So we had more frequent visits so she could keep a close eye on me.

Ultimately I got worse, and after a long six year battle, I was approved for disability and I secured insurance. We immediately resumed Mestinon and started IVIG. Over time, however, every IVIG infusion brought severe, throbbing kidney pain. It was a red flag for me as my maternal grandmother passed due to kidney failure, and my cousin had undergone a kidney transplant. On top of that, I was no longer experiencing the same level of symptom relief as before.

Navigating treatment shifts and plateaus

I immediately let my neurologist know what was going on and my concerns and fears. She informed me that Vyvgart had been FDA approved and I would be a great candidate for it. So we switched over to Vyvgart. It was amazing in the beginning and I felt immediate relief. I almost felt like my dreams were in reach again.

Unfortunately, my body ended up hitting a plateau and I felt like I was running off fumes most days. I brought it up to her and back to the drawing board we went. She suggested plasmapheresis, but after undergoing multiple surgeries and procedures, I wasn’t comfortable having a central line placed and she understood. So we started Ultomiris.

Living with the long-term impact of MG

I have had a couple of visits since then and we have had good results. But the vital key takeaway from MY situation - remember we are all different - is what my neurologist helped me understand: that due to the years of damage that has already been done, my MG isn’t going to be easily dug out and fixed. I have seven years worth of damage inside of me and we may never know what an ideal "normal" looks like for me. So what I picture is back in the beginning of how my fatigue and muscle fatigue symptoms were and where they are now. I know if I get worse than I was while fighting for disability we have a problem.

Your health requires your voice

We are all different. We all have different relationships with our doctors and we all see doctors with different mindsets, and that is the hard part. But as long as you are using your voice, speaking up, and advocating for yourself, then you are doing your part.

If you feel like your doctor isn’t listening to you, your fears, or your concerns regarding your current treatment, it IS okay to seek a second opinion. You have have every right to take action when adequate steps aren't being taken on your behalf. If you wait too long, there is always that possibility of potentially ending up in a hospital due to a major flare or even a crisis - and I think it is safe to say that NONE of us want to be there.

Follow your gut, follow your heart, pray, mediate, and do what you need to do to protect your well-being. But never wait until you can’t wait any more.