How Do I Get Answers with MG?
Last updated: December 2022
I know many people with mysterious symptoms, such as those that appear with myasthenia gravis (MG), who are finding it increasingly difficult to find qualified physicians to diagnose and treat them.
Many people are finding articles on the Myasthenia-Gravis.com Facebook page and are seeing some of the same symptoms that they or a loved one are experiencing, but are unable to get a diagnosis. Others have possibly been given a diagnosis, but are struggling with their treatment.
It is frustrating
Finding physicians, including neurologists, that are knowledgeable in autoimmune diseases like MG has been difficult for some and impossible for others. So, what do you do?
You’ve got to find answers. I know firsthand how frustrating it is to have debilitating symptoms or watch a loved one suffer with those symptoms and can’t get answers. Why are so many in the medical field gravely uninformed with what’s possibly causing those symptoms? Maybe this will help shed some light.
Lack of attention for MG
I am a retired registered nurse and a person with myasthenia gravis. Most of us know it is a rare disease - many people have never heard of it or know very little about it. I, too, have found most medical personnel are minimally knowledgeable of the disease. Here's one reason I believe why.
When I went through nursing school, we barely touched on diseases in the muscular dystrophy family. As I recall, we didn't even spend an hour on the topic! Even though I knew it was a disease I didn't want, it wasn't until I was diagnosed with it myself in 2008 that I started learning more about it. I’ve had to teach most of the physicians I’ve had since.
Slowly but surely, our voices are finally being heard. Maybe it'll change their "bedside manner" or maybe it won't. But we have to keep trying and we can help others learn! In the meantime, find a neurologist to confirm a diagnosis one way or the other.
Finding qualified doctors
So how do you find a qualified physician? Where do you get answers? If you haven’t already been referred to a qualified, knowledgeable neurologist, check with the Myasthenia Gravis Foundation of America or use their physician referral list for neurologists in your state. They can give you information on qualified neurologists in your area.
Because myasthenia gravis is such a rare disease and many people are so uninformed, you may have to drive a distance to see a qualified neurologist, but it will definitely be well worth it!
Myasthenia-Gravis.com can also offer you a lot of information on symptoms, diagnosis, living with MG, or caring for a loved one with the condition. Because of a group like ours, our plight and myasthenia gravis itself is being noticed. More people are hearing and learning about it through our community and through every one who passes the information on to others.
Standing up for our care
It makes us more knowledgeable in championing our own care or that of a loved one. Though this does not excuse the ignorance, it does explain why many don't know. It also gives some people enough information to finally confirm that their symptoms are real and there is a name and treatment for their symptoms and disease.
My most frustrating MG symptom is _____.