Reply To: Autonomic involvement

May 26, 2012 at 3:20 am

Thank yall so much!! Sorry that you ever feel that way too Lori- it’s frustrating!!! I have seen SOOO many dr’s about this whole thing that the thought of more time, money etc to go up to mayo or similar right now doens’t sound very tempting.. As you said as long as the IVIG is working then I don’t have to have a name to this mess..I would think with 12 or so neuros that I”ve seen that if they can’t find an answer, it just might not be out there haha.. though new things/possibilites do keep popping up I feel like.. I still need to go get my chest scanned.. but between a seriously heavy work schedule recently, the kids and frequent ivig.. the LAST thing I want to do is go get more testing/dr’s appointments.. ugh.. but I will in the coming weeks. If EVER i start slipping, and it’s not working well, ill be calling probably MAYO asap!!!
The one thing (well i have lots actually) that freaks me out.. my finger tips were all jello/floppy before the IVIG. I had no pincer grip at all, couldn’t take a band aid off (wanna see a Mama get frustrated and get into tears- me trying to get a bandaid off for minutes and not able to do it, not able to hold the mascara wand etc), that freaks me out is my hands have been back to normal since that 2nd round of IVIG..I have my dexterity back 100% since then.. however the wasting has gotten a little worse .. can this be delayed?? Do people with GBS that get hit hard and fast (mine was prettty fast), get function back, but then the wasting shows up afterwards?? I worry that physically it looks worse, but I have NO increased weakness there at all, its all normal!?