gbs + then cidp

February 6, 2011 at 5:48 am

ditto on the brain fog. I think it’s the meds.
I had gbs in mar of 2010. 4 weeks in icu (I had to be intibated), I used to dream about water so bad! When I think of all the plots I planned to get water because nobody would give me anything for fear of choking.
I can remember training the nurse (through the abc board) to position me a certain way so when she fed me through the feeding tube, I would be able to taste the ensure as it went down! God bless the staff at SIUH!! After the icu, I went to the rehab unit for 3 wks., then went home.
By sept. ’10, I was walking on my own.
At the end of sept my husband, me and four dear friends, went to Italy! OMG, it was beautiful, we did so much walking, I didn’t gain a pound. The food was so good I still dream of it. Every meal we would be six people at the table and there was never a sound. That’s because we were so digging the food. With the help of my husband we climbed the top half of Mt. Vesuvius(?).
We made the plans before I became sick and I just didn’t want gbs to get in my way. I don’t regret going, but between that and the holidays the stress got to me and now I have problems with cidp (perifial neuropathy on my feet). I also have problems with numbness on my lower jaw, a tongue thats seems to big for my mouth and ringing in my ears.
I was getting these sensations that felt like I had bugs crawling up my chin going to my nose but now they’re gone. You really have to keep a sense of humor ’cause without it you might go mad!
Right now I’m getting intravenus immunoglobulin 42gms every 3 weeks and I’m taking 1200 mgs of neurotin per day. I tried to switch to lyrica but that really made me loopy. We’ll see how it goes. Thanks for the tip on vit. b’s and omega.I was taking them and did feel better but forgot after Italy. Good luck ro all and sorry I took so long.