Originally Posted by bny806

I also have the face melting thing... in fact, we were outside yesterday with some friends.. and I thought I was tolerating the heat fairly well compared to usual (just had ivig).. and then I went inside glanced at the mirror and thought "ahhhh"... our guests have got to be terrified of my face - it looks so different than usual after I've been in the heat - and that's not a good thing either!!

I have a triple furrowed tongue (it goes down on both side and the middle). Anyone else have this? I have several family members who have this too - they also have significant ptosis, but don't really notice any disabling weakness.