Benefits of Understanding MG and Being Your Own Advocate
Last updated: January 2023
Take the initiative to become an advocate for your health and you will have a completely new experience with your myasthenia gravis (MG) doctor. Every day, doctors brief patients about their diagnosis, answer questions straightforwardly, provide a treatment regimen, and send them off — often dismissing the patients' concerns.
However, when we research and dedicate time to understanding MG from many perspectives and resources, health professionals suddenly realize that we know our stuff. As a result, they take us seriously, are thorough, and give us their full attention because we won't settle for inadequate care.
Clueless about MG after diagnosis
A doctor diagnosed me in the emergency room after my first MG crisis. For the following, my mom desperately tried to get me an appointment with a doctor who treated MG. I was so weak I had no desire or energy to research treatments or read anything regarding the condition. It was all too depressing. My parents read the scary side of MG and didn't focus on anything but getting me in with a doctor.
I was finally seen by a doctor who recommended the maximum dose of prednisone, and 2000mg a day of CellCept. I knew nothing about this disease, so I rolled with it. I trusted my doctor knew best having worked under other MG doctors with plenty of experience.
But as time goes on, I continue to become more knowledgeable about MG, treatment and side effects, and other's experiences. I wish I had started with a different treatment regimen, but that is the benefit of educating ourselves! We can make decisions with our doctors that we feel good about and know the possibilities we can expect.
Information on websites and forums
Where can you learn about MG? Multiple useful websites, organizations, and forums publish posts, studies, discussions, articles, and stories that provide the variety of voices we need!
MG affects all of us uniquely. Forums are the best place to find a community of individuals all relating to MG: patients, family members, friends, or health professionals. And everyone is inclusively there to empower each other! Every discussion may not be rainbows and butterflies, but knowledge is everything. It empowers us to assist and accommodate our bodies rather than letting MG take over completely.
New stories from advocates and patients are always ensuing, covering every aspect of life with MG. It is not common that you will have questions you can't find information on or people discussing. Still, if so, you can be the one to get that conversation going! The benefit of forums is you can stay anonymous. It becomes effortless to put yourself out there - your voice and experiences are a to benefit all.
Different organizations and social media
Websites hosted by different organizations are the home base for finding MG communities. The forums, new scientific studies, articles, discussions, questions, and a platform to share your story is all in one place, making it uncomplicated.
Social media is also a popular place for people to connect with MG. Go to your favorite social platform and search the hashtags for #myastheniagravis. You will find a collection of many individuals advocating, informing, and sharing their journeys.
Benefits of understanding MG
There may be a scenario where we are teaching our doctor many things about MG. It does not necessarily mean they're unqualified to treat our disease. But doctors who treat MG likely only have a minimal number of patients with the condition. Considering every condition they specialize in, they may not always be up to date with new scientific findings, and they may not read about patient experiences other than their patients.
So, it is up to us to know our bodies best and what we need and feel is the best decision based on our gathered knowledge. Please don't ignore the perspective of your MG care professional, but take what they say as what it is, an opinion. Everyone with MG is unique, so any treatment or health decision never guarantees improvement.
Informing medical professionals
I always end up informing other medical professionals. A gastroenterologist told me they would prescribe magnesium to help with my heartburn and stomach issues. I let them know of the dangers of magnesium with MG. They responded that they've been prescribing magnesium to MG patients for years.1
Whether they were defending themself with a lie or telling the truth, it was worrisome. Not all doctors will be reliable - double-check the drugs contradicted with MG. Unfortunately, with rare diseases, it is up to us to catch any errors!
Have a printout of MG basics and a list of MG cautionary drugs with you at every appointment. You can find this information with a quick internet search that, detrimentally, many doctors fail to do.
How often do you experience MG exacerbations/flares?