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...
For the first 2 years with this lovely MG. I felt all alone. I tried to write down questions to ask at next doctor meetings.
Then, I found this wonderful site.
I have learned, I am not alone with weal neck muscles, I am not the only one crawling the walls on Prednisone, which meds to avoid, which meds worked well for you, breathing issues.. the list goes on, what I have learned from all of you.
The most important thing I have learned from each of you.. You compassion for each other. I feel like we are family.
Nasty decease, this MG, knowing we have partners with each other makes the journey easier.
You are all my friends, if we friend each other or not. You are my frien
Dee
PS
I might as well admit something. My photo is 5 years old before MG and extra weight gain. I will change it..someday...it is my allusion of what I still wish I looked like.
Then, I found this wonderful site.
I have learned, I am not alone with weal neck muscles, I am not the only one crawling the walls on Prednisone, which meds to avoid, which meds worked well for you, breathing issues.. the list goes on, what I have learned from all of you.
The most important thing I have learned from each of you.. You compassion for each other. I feel like we are family.
Nasty decease, this MG, knowing we have partners with each other makes the journey easier.
You are all my friends, if we friend each other or not. You are my frien
Dee
PS
I might as well admit something. My photo is 5 years old before MG and extra weight gain. I will change it..someday...it is my allusion of what I still wish I looked like.
The wonderful people on this site, including yourself, are the only people I can talk to who can relate. I live in a medium sized city, and am sure their are perhaps a bakers-dozen of myasthenics around, but have never crossed paths with them yet.
This website is a blessing, as it has connected me with all of you.
Take Care. Chris.
My DS family is always there for me when I'm down, or need answers to questions, and when I need advice. Without this group I would be lost. You're right my DS family makes this journey much easier.
Michele
You have said it well.. you like myself found this group recently and my only regret is i didn't know of it in 2000 when i had my dx.
As my Mom god bless her she reminds me " Christopher , better late than never. My Mom has also been a mentor for me at the young age of 84 to "never ,ever no not ever give up."
Keep the faith Dee and in my own selfish way lol Im glad your my friend as well , official or not.
Nice post , thank you and ..Never give up..Cj
Don't even worry about it. We like all people here. It's hard enough for many of us to even get a good smile in these days. Takes too many muscles! I hate taking my picture now and I used to be pretty vain like that. Modeling and such...
Funny, I used to have my picture up on the site here and it "affected" people, not offended, but affected. Topics could get heated up and still can at times. Some people come and go and some have left because people have offended them. Some people have actually been removed from the site. Some of us unfortunately have even passed away. Things were different in the past and I am not at all shy to put my picture up, but since I didn't want to anymore back then, I just keep my something relaxing like my waterfall. Lovely, isn't it? :)
TJ
I had to laugh when I read my original post. I should have read before I posted. Blurry vision, fat fingers misspellings galore. lol. If we don't laugh at ourselves we'd have to just sit down and drown in our tears.
Love you guys.
Tomorrow is IVIG, it takes 3 to 4 hours. I will come home tired and crawl into bed. The next day I'll be up and running. "Running" hum I remember it well.
Dee.