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-   -   AGGHHH!!!! What's wrong with my tongue? (https://www.neurotalk.org/myasthenia-gravis/144433-agghhh-whats-wrong-tongue.html)

Tracy9 02-09-2011 12:27 AM

Well, I've emptied all three tanks my brother gave me so I'm all out anyway. I don't know why it makes me feel like I can catch my breath. Now that I'm on Mestinon though, I haven't felt the need for it. Boy the Mestinon is helping a little more, I folded laundry today and was up for over an hour! I have not been able to do anything for soooo long. Now I understand why you guys kept tellling me to go to the ER....I am seeing the amazing difference now, how wonderful it feels to be able to breathe even a little bit better.

I'm also feeling so ****** off the 3 ER visits I made and no one admitted me. I realize now I was VERY bad off and needed to be admitted. I even brought one of Annie's articles with me and it didn't matter. WTH, I was too weak to walk, I met ICU criteria....I just don't know what to do if I get that bad again. Not that I'm real far from it, just the little improvement feels so wonderful.

AnnieB3 02-09-2011 01:22 AM

Well, maybe next time you could bring the article and a lawyer. ;)

I'm glad you are seeing some improvement. Don't let that fool you. I am again going to say that it may take months for you to be at "your normal." Think of how long it takes for stroke victims to recover. This isn't like that but it does take longer to recover the more you've been pushed towards an MG crisis.

It might be worth a phone call to an administrator at the hospital. Or at least a patient representative. Sometimes you have to let the higher ups know that nothing got done for you. And then ask them what will be done for you the next time you are in an MG crisis. Maybe even mail them the article (or articles). As long as you put it in terms like "I am only interested in solving a problem so that I can get care," they may not get all defensive.

MGers can have trouble breathing out and may not be able to expel the oxygen well enough. I hope you will have a good appt. with the pulmonologist. They have a LOT to do for you.

Annie


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