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rumpled · 05-22-2009, 02:20 PM

Quote:

Originally Posted by erinhermes

So you were "re-diagnosed" with MG? WTH? What is WRONG with your docs? I don't see why on earth they ever changed your dx to begin with!
I wonder how many of us have parents that have MG symptoms as well......my mom does, though she won't see a dr - her fear of needles is worse than mine - go figure!

I wish you had a dr that actually cared! I don't understand why you have to go through all of this........don't they realize how dangerous the choking is? How weak you are?

As for your mom, 1/2 a pill ain't gonna do squat! Anyone in their right mind would know that! I was on 480 mgs of mestinon and still had a crisis and ended up in ICU - sometimes it does the trick, most of the time we need more meds - sadly - sigh...........

I have missed you! I was so glad to see that you posted! There are so many new people on the forum now!

I hope you FINALLY get the help you need! I hope your mom feels better as well!

Please let meknow how you are when you have the time/energy!

Big, big hugs!
Erin

I am sero-negative and my EMG's are negative with only a positive SFEMG - and while my mom's eyes are wild, mine are pretty fine. The EMG's do me in.

I told my mom that half a pill was not even a full dose but she listens to he doctors who must have their head in a place where they see with one eye out a belly button and not to me.

They are not even doing any more testing and she is not pushing. Joy.

Yeah, the choking drives me nuts as it hits me even when I am not eating - so I choke on my saliva like when I am watching a movie or just sitting around and it can get hard to breathe at times. I try to limit my activity but it is a double edged sword - I do something and then end up in bed, or I just stay in bed as I know if I do something, I will end up there anyway. What a life. Or is it?

If you think getting a diagnosis for MG is hard, my endocrine stuff is also a nightmare. I have peripheral sight loss, an ACTH that is 3117 (6-48) and the docs say, well, the MRI is ok (presumed) - and the MRIs are the least reliable piece and often up to 40% inaccurate. Great. Whatever.

I have been reading. I just do not post much.

I am glad to hear you are going to be able to reduce your pred!