Brocallie....a question! - Neuromuscular Diseases Message Board

Gobsmacked · 12-05-2007, 10:54 PM

Hi,
How was your trip to NY??

My daughter had her followup last week. The neuro thinks she's doing really good, and she was. He added depakote for her bipolar but nothing else. Today she had her gi button removed. Now she is slurring her words and having trouble swallowing, not major. I know you're not a dr., but frankly i would rather know from someone who has this stupid illness, would stress be enough to have some symptoms worsen? Since last night she has done nothing but worry about getting bad again and needing that button. She has talked about it allll day long and the symptoms didn't start until she was getting ready for bed. I am supposed to find a gyno to talk about seasonale birth control since she got weaker during her monthly, even then it was a general fatigue. No matter how much i read about this i just don't even know what to ask the dr.

Brocallie · 12-09-2007, 06:13 AM

Hi Gobsmacked,

The trip was good. Magical, even. MG stayed away the whole time, just rearing it's ugly head again on the plane ride home. I'm back to DV again now and planning more IVIG to see if I can get some sustained control.

ANYTHING can cause worsening. It's the pits, too, especially for the first months and years because you can feel so good, only to lose it all. I can go from perfectly fine to really sick literally in a matter of hours.

Sorry I can't offer any advice such as "Do this and the weakness will stop..." The best I can offer is enjoy the good days and go with the flow on the not so good ones. Be ready for anything.

Happy Holidays to you.