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Myasthenia Gravis For support and discussions on Myasthenia Gravis, Congenital Myasthenic Syndromes and LEMS.

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Unread 02-14-2013, 11:58 PM   #1
gr8ful
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Some may have read my post about being happy to have learned I have a thymoma yesterday because a thymectomy could provide a means of eliminating my newly diagnosed MG. Well, pingpongman woke me up a bit and thanks to him for the reality check. In hindsight, tumors are probably never a really good thing.

I don't know if you all like reading the thought processes of newly diagnosed Myasthenics. To me, this is all real, honest and new. I'm watching myself as I go through this process. I don't like it. The uncertainty is pretty tough. I don't have many symptoms yet but I am surely scared of what may develop. Some have it pretty tough but I suppose you all can remember when symptoms were mild and the whole MG thing was new. I Hope you guys are OK with some doofy newbee posts. Someone has to be the new kid on the block.
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Unread 02-15-2013, 04:37 AM   #2
Anacrusis
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Quote:
Originally Posted by gr8ful View Post
Some may have read my post about being happy to have learned I have a thymoma yesterday because a thymectomy could provide a means of eliminating my newly diagnosed MG. Well, pingpongman woke me up a bit and thanks to him for the reality check. In hindsight, tumors are probably never a really good thing.

I don't know if you all like reading the thought processes of newly diagnosed Myasthenics. To me, this is all real, honest and new. I'm watching myself as I go through this process. I don't like it. The uncertainty is pretty tough. I don't have many symptoms yet but I am surely scared of what may develop. Some have it pretty tough but I suppose you all can remember when symptoms were mild and the whole MG thing was new. I Hope you guys are OK with some doofy newbee posts. Someone has to be the new kid on the block.
We can all choose what we do and don´t read. The beauty of writing on a forum in addition to private messaging is that the minute you think something is ´doofy´ then someone else out there reading has just learned something important from your question and someone else´s answer - People are happy to read stories and questions and happy to help with something that once was new to them too

Good Luck with the whole procedure
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Unread 02-15-2013, 07:20 AM   #3
Ravenclaw
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Post as much as you want!

When I had symptoms but no diagnosis I joined a whole lot of forums, and posted an awful lot of questions. After my diagnosis I wanted to know everything about MG, because I didn't feel like the stupid descriptions fitted. And when I asked my docs about some symptoms they said: that's not MG.
It's so uncertain, you have to wait and can't ask anyone because you don't know anyone with MG because it's rare.

(And, I too hoped I had a problem with my thymusgland, because I was also told that an operation is almost the same as a cure - it's not that weird)

So hail for forums: I learned a lot. It helped me a lot.
Don't be afraid, if you want to ask something or just spill it out, it's what we're here for.
Good luck anyway
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Unread 02-15-2013, 07:28 AM   #4
pingpongman
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For most it is a long tough journey. We all take a different path with different results. Having somewhere to go and learn, vent, chat or just read about our problems provides some of us with comfort. I accept my MG but that doesn't mean I have given up. I am old now but if I was in my prime trying to support my family it would be a completely different story.
I hope your journey is a good smooth one but if not we are here for you.
Mike
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Unread 02-15-2013, 08:43 AM   #5
Anacrusis
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Quote:
Originally Posted by gr8ful View Post
I'm watching myself as I go through this process.
I'm not really sure where my thought processes would be right now had I not stopped by here for part of my journey.....
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Unread 02-15-2013, 09:10 AM   #6
limpy
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When I first joined this board, my symptoms were not that serious, and I even questioned whether I even had mg or any other condition, since some days I felt totally fine. I must say now, that I am so thankful that I did join and read the experiences of others new and old, because it is those experiences that helped me to cope with the horror that I just endured in the Emory Hospital.
So no matter what you post, it can be beneficial to someone.
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Unread 02-15-2013, 10:30 AM   #7
Southern Bell
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I also want to welcome you to this wonderful chat room. I have found it to be full of helpful questions and experiences with MG.

I also had a very large thymoma. After experiencing a week of very strange symptoms I ended up at Emory Hospital. They performed a thymectomy but my symptoms only got worse. That was four years ago and I feel that I have been going down hill ever since.

It is interesting to read that "limpy" had a bad experience at Emory, because my experience was without question a completely horrible one. I always thought that Emory was the best hospital and it may be for basic illnesses, but not for something so rare as MG. I truly believe that Emory tried to kill me!

Keep reading and responding, you'll be pleased with the information you will gain.

Southern Bell
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