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...

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/ Myasthenia Gravis Support Group

Interesting online blog Yr of MG

Rhanson
Rhanson
Stumbled on to this year of MG blog. Interesting if you have time to do some reading
https://365daysofmyasthenia.wordpress.com/
MGOhio
MGOhio
Vey interesting.

Boy, I wish I was that spry !

Thanks for posting Russ.
jettybo
jettybo
Love this site so far. Just looked at it. Very interesting way of describing what it feels like to have myasthenia to a friend. She calls it her "spoonie" theory. Follow the link above and you should be able to find it.

She also reminded me of so many things as well as each of you do. Because my MG was in remission for so long (8 to 10) years, I had forgotten how to deal with day to day living with MG. Paying for it the next day when I overdo was something I had forgotten. I feel like I have been run over by a freight train today after a day of
pushing myself past the limit. Didn't think I had too much planned but some unexpected things happened early in the day (dropped laptop and took hubby all morning to fix thinking the whole time I had killed it AND unexpected company dropped by for a couple of hours. MAJOR STRESS! At that point I should have cancelled two other events planned for day which I DID NOT. (Fortunately I am retired or I would not have been able to go to work today.)
Joe-Fodor
Joe-Fodor
What a refreshing look at our disease -- her "Myasthenia Gravis is Sexist" post is right on! Because she takes a selfie of herself along with every post, it is also instructive to look at her as she struggles to drop down to 1 mg of steroids -- her eyelids tell the story. ~joe
Joe-Fodor
Joe-Fodor
She also introduced me to a whole new category of things to worry about:

"When I first got put on aziathioprine, my consultant warned that it would be risky to go into open water that is stagnant. He said there are strange types of bacteria and infections lingering in the stagnant water and, with my lowered immune system, Id be more susceptible to picking them up. "