Had You Heard of Myasthenia Gravis Before Your Diagnosis?
When you were diagnosed, or a doctor proposed you could have Myasthenia gravis, had you heard of it before? If yes, from where?
I was utterly clueless about what it was. Who else is with me? How did it feel being diagnosed with a condition you were unfamiliar with?
- Jodi, Team Member
I had never heard of MG. Looking back, I probably had it for a while. I was initially diagnosed with sinus issues, stress, and a thrush. Thankfully, my family physician had seen it once in residency and sent me to a neurologist.
so many never heard of MG until they were diagnosed. So glad to hear your family doctor recognized it and gave you a referral. How have you managing since diagnosis? Please know our community is here to support you in any way we can. Feel free to reach out anytime. Wishing you well. Kindly, Jessica, Team Member
I was very active in 2013 (age 47) when MG hit me like a brick. Unfortunately, it would take another five years, six hospitals (including University of Chicago, and Mayo), and countless tests and retests before I wound up hospitalized due to shortness of breath. That was when someone finally realized my diaphragm wasn't able to move air properly and I was given a Mestinon trial for reasons I didn't yet understand. Within a week I no longer required a cane for mobility, or need to sleep upright because I couldn't breathe lying down. The successful Mestinon trial confirmed Seronegative MG in December of 2018.
My own research had indicated MG early on but I couldn't get anyone to take me seriously and was even referred for cognitive behavioral therapy by one neurologist because he believed it was all in my head.
On a side note, my 85 year old father just tested positive for Generalized MG after I witnessed him going through the same runaround as me after presenting very similar symptoms. My advice would be to not let your health concerns be easily dismissed, you know when something isn't right with your own body.I had never heard of this. I was having difficulty swallowing and my speech was slurred at times. My primary care physician sent me for a brain MRI as he suspected a stroke. That test was negative, but my symptoms continued. I had my throat scoped, and had x-rays taken while I attempted to swallow various foods and drinks. But nothing came of any of these tests. Finally, my daughter did some research online and told me it sounded like I may have MG. I mentioned this to my physician who said "You know, she might be right". He then sent me to a neurologist who did a simple blood test which came back positive. All of these examinations and tests took well over a year and apparently all it took was a simple blood test.
Same thing happened to me. I definitely felt like a lab rat during the process. I'm glad your daughter was able to help you get diagnosed. It's funny. I've been diagnosed with MG for 11 years now and still when I go to the hospital, they still do stroke test on me even when I tell them I'm having a Myasthenia Gravis flare not a stroke. It's super frustrating at times and can make my symptoms worse. I understand they are educated in their field but I also wish doctors would really listen to their patients. It would save us a lot of unnecessary tests and time. - Jazmin (MG team member)
I've never head of it before, when my doctor mentioned it for the first time i was really unsure what to do, I got officially diagnosed around a week ago. I still have a lot to learn and surely don't know all about it, it feels weird to be diagnosed you almost feel a bit lost? Learning how to live with such a big change is really difficult.
I learned today that my bloodwork tested positive for myasthenia gravis. My eye started dropping on Thansgiving day So I'm trying to learn all I can get ready for a ride of good days and not so good days. I find that the cold wealther will be a challenge and also the hot days so take care and remember that good days will happen soon when you are down cheers Joe.
