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...
I was diagnosed with MG back in 1977 when I was only 7 years old. Back then it was such a rare disease that it took almost a year for the doctors to find out what was wrong. I have never met anyone with MG and even though I knew it was out there and in a way kind of normal(for me)l. I couldn't help but feel not so normal. I am really looking forward to making friends and having conversations with people who actually understand how I feel and what I go through daily because no matter how much I try to explain many people just don't get it.
You'll find so much kindness, support, encouraement and wisdom here. Each of us understand how others just don't get it, and either think we're not really sick (because we may not look like we are), or if they do acknowledge it, they have no idea how to respond to us. Most shocking is the lack of understanding among medical professionals, even the neurologists.
As for me, I've had symptoms for 10 Years, not nearly as long as you, but because I'm seronegative, I have gone back and forth between being undiagnosed, then diagnosed with MG, then undiagnosed again when I didn't get "better" after only one round of IVIG and some prednisone (according to the neuro who I later discovered doesn't normally deal with MG, or prednisone).
IF you can find an MG support group anywhere near you, it's well worth the investment of time. I found the one near me through the kindness of those on this forum, and it's helped me immensely to meet others in my shoes. I've formed an almost instant bond of friendship with the others, and they have been like a safe harbor through the storms caused by the ups and downs of this often bewildering disease.
Sending warm wishes your way!
Tamara
We're here for you.
Carly