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Old 06-24-2017, 08:55 PM #5
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
AnnieB3 AnnieB3 is offline
Grand Magnate
 
Join Date: Feb 2009
Posts: 3,306
15 yr Member
Smile

I think many people use pseudonyms. I would prefer if doctors couldn't track our every word on the forum. They tend to become offended enough when we speak openly!

Yes, thanks, Erin. I worry that you are having such persistent issues though.

I didn't really relay my own experiences, did I?! In order for me to be active later in the day, I take a morning nap after breakfast. If I don't, I'm useless for the rest of the day. But, again, I don't take anything but Mestinon. Everyone is different in how they cope with that persistent fatigue.

Driving while MG is bad is similar to driving drunk. Response time is reduced, fatigue can alter reflexes, weakness can make holding the arms on the wheel harder, legs might not push as hard on the gas or brakes, and double vision causes all kinds of problems! I won't drive if I'm not up to it.

I'm lucky that I don't have swallowing issues too often. But I don't socialize much. When I have what I call an MG choking attack, that can be so bad that I strain my back muscles (like I do when I have pneumonia). You never know what muscles will become weaker, thereby adding to the overall fatigue.

Even with treatment for MG, there will be some level of mental fatigue. And physical too. Unless someone is in remission, MG is still exhibiting some signs of existing. That's why we still need to alternate activity with rest. MG is unique in that need, even though some other diseases do cause cognitive issues or sleepiness.

Listen to your body. That's the best way to know what will happen next. I can tell when I'm in a downward spiral and will need to go flat soon. And if someone wonders why you are kind of out of it, ask them how they would feel coming out of general anesthesia! MG is similar to that (anesthesia reduced acetylcholine), but MG doesn't wear off!

Annie
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"Thanks for this!" says:
ErinBear (06-25-2017), pingpongman (06-24-2017)
 

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