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Senior Member
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Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Senior Member
Join Date: Jul 2008
Location: San Antonio
Posts: 1,471
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Hi Shar!
Hi honey! I'd definitely go in for more IV IG - sounds like you NEED a boost! 
If you EVER have breathing problems, please do not hesitate to go to the ER and let your Dr. know immediately! There is nothing scarier than not being able to breathe - I know whereof I speak - unfortunately.
If the mestinon works, then by all means take it every 3 hours. I sometimes take mine every 2 hours or so - your body will let you know when you need to.
I think the first year is always the hardest. I know it was for me. I was scared
all of the time, that is until I spoke with Dr. I an made him PROMISE that he would NEVER allow me to get that sick again - ever. I then made him look me in the eyes and promise again - he did.
Since then there have been many "bumps" in the road, but I truly believe in remission. People all over the world go into it daily - they are just not on this site b/c they are out enjoying being well again!
Do you have a back up system in play? One where you can call a friend or family member if you experience shortness of breath? I did and it really helped me feel safer! I also made sure I was NEVER alone the first yr. - to the point where would have someone standing outside of my bathroom when I took a shower. It may sound over the top, but after 3 crisis situations and 8 days in the ER made me a bit leery.....
There is NOTHING wrong with being worried. MG is scary - plain and simple. I was afraid of everything, but when I started on Paxil, my anxiety went away. Don't get me wrong, when I feel really, really weak I do become frightened, but it is nothing compared to before.
Just let your Dr. know that you NEED a boost and get some of that "liquid gold" or "go-go juice" and you will feel better really soon!
Hugs and prayers your way!
Love,
Erin
Quote:
Originally Posted by SharS
I just wanted to check in and let you all know I haven't disappeared again - just feeling really weak and not able to type much. I'm still reading the posts each day to keep up.
I don't know what's going on with me. My chest feels like an elephant is sitting on it and I can't breathe at all if I get up and hardly breathe even sitting. I have to prop up in the bed. My neck is also extremely weak and I have some kind of weird eye pain going on. I did sit outside and sprayed myself with Off mosquito repellant yesterday but that wouldn't effect MG would it?
If I don't get better tonight, I'm going to have go in tomorrow morning and have my IVIG. I was trying to hold out and space them 2 weeks apart instead of once every week, but I don't know.
I get so confused and paranoid about taking too much Mestinon. I think, ok, maybe I'm taking too much (60mg every 3 hours). It's been 4 hours since my last one - thought I would see if it helps to not take it, but I feel even worse now. The whole breathing thing is so scary.
Sorry for the long post - guess I'm a little worried.
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Erin
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