new here too

August 13, 2010 at 5:50 pm

i was diagnosed with GBS on may 28 and went thru a 5 day treatment if IVIG. and felt alot better . how ever 3 week after i got the dreaded pins and needles feeling again and lost most of my strenght again. and now the docs tell my thats its CIPD. and have now gone thru another 5 day treatment of IGIV again ending july11. im feeling better except still somewhat weak and numbness in my toes. its now August 8. i was in to see my neuro last tuesday went thru another nerve conduction test. they are now starting me on a two week regime of ivig starting on august 16. i didnt make it to the 16th on monday the 9th i went back to my favorite er to see the oncall neuro and got readmitted to the hospital. got 3 60g doses of ivig. its now friday the 13th im back home and will be starting my 2 week maintenance schedule if ivig starting this coming monday. and i too am on 50mg daily of prendezone. im hoping this works. this up and down is very frustrating. any info on ivig and steriods together would be great.

Ive been reading alot of the posts here since mid june and its been helpful for sure in answering alot of my questions. there is a great bunch of people here. and i hope in time i’ll be of some help to others on this road of CIPD hell.
take care all for now


New here too….

February 16, 2007 at 6:42 pm

I am new to the forum as well, diagnosed with GBS 5 days ago, still in hosptial, can’t walk, and lots of numbness, tingling and pain in my lets. There are a few things about my GBS that have become “perplexing” to my docs. I haven’t lost my patellar tendon reflex action, and they have found 3 white spots on my brain that don’t make sense. I’ve had 3 IVIG’s tmts., but docs stopped it yesterday because of the spots on the brain. Anyone have any similar experiences? Any help, thoughts, direction would be great. 🙂