Myasthenia Gravis Support Group
Myasthenia gravis (MG) is a neuromuscular disease leading to fluctuating muscle weakness and fatiguability. The hallmark of myasthenia gravis is muscle weakness that increases during periods of activity and improves after periods of rest. Although myasthenia gravis may affect any voluntary muscle, muscles that control eye and eyelid movement, facial expression, and...
Hello everyone,
**Posted this in the "Young People with MG" Group as well**
I rarely post on here, but I thought I'd share the links to my blog/YouTube channel. I'm recently diagnosed with Myasthenia Gravis. Shortly after being diagnosed I noticed the lack of information/personal stories/etc... online. I've been documenting my treatments and experiences with Prednisone, IVIG, Plasmapheresis (AKA plasma exchange), Imuran, Mestinon, and how I've maintained a good attitude through it all.
I hope this helps someone! Please do not hesistate to reach out to me (us Snowflake warriors have to stick together)
Youtube: https://youtu.be/cD8SlrlnJB4
Chronic Illness Blog: https://www.ashleysanatomy.com/
If any of you have social media platforms discussing life with Myasthenia, please share <3
Welcome to the group!
I found that writing about my MG helped me get through the early and worst part of it. I did it on a blog too, one that was more than just MG. As I was 65 when I was diagnosed, my posts were from a different perspective than a young person. my MG blog entries searched out from the rest of the blog -- my info is more about the path through treatment to remission (I was lucky).
https://www.google.com/search?q=myasthnenia+gravis+site%3Ahttps%3A%2F%2Friverroadrambler.blogspot.com&oq=myasthnenia+gravis+site%3Ahttps%3A%2F%2Friverroadrambler.blogspot.com&aqs=chrome..69i57.11663j0j4&sourceid=chrome&ie=UTF-8
I think the best blog I have seen on MG is a young woman in Britain who did a daily blog for one year of her life with MG. You can find it at https://365daysofmyasthenia.wordpress.com/ She shows photos of her face -- the droopiness of her eyes sort of a measure of how bad the MG is that day or week.
Good Luck
Russ