Reply To: IVIG/treatment and symptoms

March 5, 2012 at 3:33 am

oh Dawn, I’m soo sorry!! I can’t even imagine the stress you are going through!! Nickel size is pretty big- ouch!!! You will be in my prayers that it will all be just fine! Keep us updated if that’s ok with you, wish we could do more to help!
Thanks for that description of the repair too.. that helps! 🙂 I have to have really good dexterty for my job, and I had lost it- I couldn’t even color with my 2 year old – holding a fork, crayon etc was almost impossible. After that 2nd IVIG i picked up a crayon and just cried with joy that I could color!!! I went back to work and had my “Groove” back with my legs, speech, engergy and hands.. thankfully they weren’t “hit” with the relapse like my hips were. Its strange my palm side has gotten thicker- like my hands used to look, but the top side thinner?

I had a strange thing happen today.. I started getting my shocks back (it took about 2 days after this last IVIG to resolve the shocks.. I had gotten them since that relapse.. They have been gone until today and now having them every once in a while).. I went to the store and was walking and both my feet felt REALLY warm and burning up to my ankles, then the further I walked I went more and more numb- from the mid trunk down.. COMPLETELY numb.. I wasn’t even sure how I was walking.. it was the strangest thing!!! I have been more numb since, but not like I was when I was walking- anyone had this before?? is that a bad sign? I’m trying to think of a nice way to “suggest” a more aggressive IVIG plan with my dr.