Reply To: 3rd IVIG not as effective?/relapse?

February 19, 2012 at 2:44 am

Thank you so much Patty!!! Its soooo nice to hear you say that your symptoms are similar to mine!!! I still have fears with my CIDP being atypical that it could be something worse.. especially with the minimal effect of this last IVIG… though that 2nd one was the most dramatic amazing effect I could have imagined… The drooling and slurred speech reallly worries me!
haha, funny you say that about your toe! I run into so many walls, doors, etc just loss of proprioception of my limbs, and I broke my toe.. since this last relapse/virus I can’t feel it haha.. so that’s good I guess!? It’s amazing how fast my body feels like it declines once the IVIG wears off!
I have good spirits most of the time.. pretty much if I can believe my Dr’s and that the IVIG worked.. and believe my diagnosis of CIDP I’m good.. but there are days where the slurred speech, swallowing, muscle wasting etc etc. freaks me out where I think I have a worse diagnosis (als) and I get upset.. I just have to remember after all the emg’s and dr’s (over 12 neurologists) all telling me it’s not that that they have to be right! I can live with CIDP compared to that ANYDAY! I just wanna be there for my kids so badly, and hopefully I’ll be able to be semi active with them!