Reply To: New here. Recently diagnosed with CIDP; getting IVIG.
so glad your feeling better!!!! That’s great! how many days post infusion is this for you?? I remember my 2nd round of infusions.. i was so depressed that it wasnt’ going to work on the third day.. and then when I woke up that 4th morning reached to grab my phone, and for the first time in months I could actually grab it not floppy fingered.. I went to flip the light switch on, grab toilet paper, open a door.. for the first time in MONTHS i could do this- I think I smiled NON STOP (which I hadn’t been able to even smile/ or make a cry face either) for months. anyhow.. so day 4 I notice improvement.. and i feel it wearing off by day 10-14.. seems all too short lived!!
As far as the wine goes – Man, I hear ya!!! before I was diagnosed I had a glass of wine (as I have done occasionally for a while… and it made me feel AWFUL!! heart rate was in the 140’s the next day, felt like I was going to kill over.. now that things seem more controlled I have a glass every 4 months maybe, and it doesn’t have that effect.. Glad your feeling better!