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Old 06-01-2010, 05:13 PM #4
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teresakoch teresakoch is offline
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Join Date: May 2010
Location: Fort Worth, Texas
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10 yr Member
teresakoch teresakoch is offline
Member
teresakoch's Avatar
 
Join Date: May 2010
Location: Fort Worth, Texas
Posts: 199
10 yr Member
Default Thanks!

I know that MG isn't a death sentence - it's just that my parents do research on the Internet, too, and of course the respiratory MG crisis is brought up, and they've already lost one child. Mostly I don't want them to worry too much, and I want them to know that I will be able to take care of them when the time comes.

I appreciate the kind words - yeah, middle age is just a barrel of laughs! I will have to say that I have enjoyed the freedom that comes from being able to speak your mind with advanced age - I don't worry much about what people think about me any more. As I like to tell people, I've raised 3 teenaged girls - there is NOTHING that you can do that will scare me now!

I guess now I just worry that every time I have a "symptom", I'm going to attribute it to MG, and every time that I read about a symptom, I'm going to be like all of those 1st-year medical students that you hear about who are sure that they have whatever disease it is that they are studying that week. Lord knows, I don't WANT to have MG, but if that is what I am looking at, I want to know ASAP so that I can go from there.

I mean, after I had the ice-pack test, I started thinking back to the past couple of months when I had been having some vague things going on. Of course, I started correlating them to MG, even though I hadn't seen a neurologist yet. I had noticed a few months before that sometimes my jaw would get tired when I chewed a lot; sometimes my arms felt almost limp, but not really, if you know what I mean; sometimes it was hard getting up the stairs at night; sometimes when I would get out of bed in the middle of the night I would have to stand there for a couple of seconds, just to make sure my legs were "all there". I haven't fallen, and I haven't ever felt numbness, so I guess that's a plus.

And it's hard explaining to my husband how it "feels", because there really isn't any good way to explain it. My muscles don't really FEEL like they aren't working; they aren't wasting away, and it doesn't sound like they will. So they feel strong to him. And I certainly don't LOOK like there is anything wrong with me, so it's hard for the family to "believe" that I am really as tired as I say that I am! And that makes me feel like I am all kinds of lazy, even though I know that I'm not.....

When they asked me how long my eyelid had been drooping, I had to tell them that I honestly didn't know, because for several months as the evening wore on, I always thought that my contact lens was just out of place in that one eye. I never thought to look in the mirror until that one night that I thought that the contact had split. So the eyelid may have been drooping much longer before that; it's just that no one really noticed it. And it's not so bad that people WOULD notice it, unless they were really paying attention (and of course, once you point it out to them, they go, "Oh, yeah! Sure enough...."). Only one person noticed it without us mentioning it, but it doesn't really become noticable until after 8:00 at night, unless I've really been using my eyes a lot.

Anyway, thanks for the help!
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"Thanks for this!" says:
Rrae (06-02-2010)
 


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