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-   -   Why...Why...Why? (https://www.neurotalk.org/myasthenia-gravis/104917-why-why-why.html)

AnnieB3 10-08-2009 02:45 PM

I'm sorry, Alice, but no, you can't predict that it will be unpredictable. Autoimmune diseases don't always have a rhyme or reason. You can take really good care of yourself and, therefore, your MG and still have it "take you down."

Like Lizzie said, it is ultimately unpredictable. We've talked about this before. Thinking you can control a disease like this is dangerous. Help it along by sleeping well, eating well, etc., yes it's helpful but it doesn't mean that MG won't surprise you.

Like you said before in another post, Alice, you like to be honest with your patients. I am bluntly (probably too much so) honest with everyone I know. Having a good attitude towards MG every day is a daily, if not hourly, struggle.

JJ, Thanks for the info on the graphics. :Thanx: I wish I could spin like that.

JCPA 10-08-2009 10:38 PM

Oh yeah Annie......:Excited: How about this??? Let's jump to it.! whooohooo!

On the predictability, yes and no. Ok for me, travel is my worst enemy so if I know I'm going to have to do that....I plan accordingly because I know it is going to pull the rug from under me for a few days. and it does!


But, this week, normal week, actually a very relaxed week but.....:eek:EEK it showed up big time this past Tuesday....no warning...even with mestinon...boom. :thud: Had to get off my feet for about 1.5 days. And it went just as quick as it came. I went to work today and worked from 8 til 3. I feel great....now.....who knows! Except God of course!:winky:

Yes, I can pace myself and I do every day. I listen to my body very closely. I am learning to look for signs of when to stop and getting better at it every day. And from reading all the posting data here on this whole forum, every one of us is unique and individualized for MG...that's just how it is....

alice md 10-09-2009 08:43 AM

control
 
Quote:

Originally Posted by AnnieB3 (Post 575921)
I'm sorry, Alice, but no, you can't predict that it will be unpredictable. Autoimmune diseases don't always have a rhyme or reason. You can take really good care of yourself and, therefore, your MG and still have it "take you down."

Like Lizzie said, it is ultimately unpredictable. We've talked about this before. Thinking you can control a disease like this is dangerous. Help it along by sleeping well, eating well, etc., yes it's helpful but it doesn't mean that MG won't surprise you.

Like you said before in another post, Alice, you like to be honest with your patients. I am bluntly (probably too much so) honest with everyone I know. Having a good attitude towards MG every day is a daily, if not hourly, struggle.

JJ, Thanks for the info on the graphics. :Thanx: I wish I could spin like that.

Annie,

being honest is great, but doesn't have to be blunt.

in fact most people will be more ready to accept some unpleasant truth, if it is gently given to them.

as to control- I am the last person on this planet to think that there is any way to control this illness. I have long ago given up on that. (not that I didn't try).

what I meant was control over your life, despite no control over your illness, and that is achievable, at least to some extent.

alice


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