Living With Gbs/cidp

Hi my name is Mark.

Back in 2003 I came down with GBS (Guillain-Barre' Syndrome) due to walking pneumonia. I shut the TV off one night and went to bed and the next morning I woke up paralyzed from the waist down. I was rushed to the hospital where I was put in ICU. They ventilated me and told my wife that she might want to consider making funeral arrangements. I spent two weeks in ICU then was transfered into a regular room. My neurologist tried "Corticosteroids-Prednisone" but it didn't work. So she started me on "Intravenous immunoglobulin (IVIG)" After 5 infusions I was able to walk a short distance. I had another 5 infusions a month later and after that I was walking pretty good. Then a year and a half later (2005) I had a bad relapse. I lost the use of my right arm and hand this time along with my legs and ended up back in a wheelchair. I was re-diagnosed with CIDP. I was put back on IVIG and have to get and infusion of 80g every 3 weeks. I've been told I'll have to do this for the rest of my life. But I'm fine with it, I'm able to walk, drive and have a better "Quality of Life" thanks to IVIG.

For anyone out there with a Neurological Disorder that wants to learn more about it or treatments, insurance problems,etc... then heres a Link to "IG living". They have a FREE magazine subscription. It comes out Bi-monthly (every other month). It has a lot of valuable information in it. You can either read it online or have it sent to you. Also at the GBS/CIDP Foudation International's website you can get a couple of FREE booklets on GBS and CIDP. Heres also have a couple of facebook sites where we discuss GBS and CIDP, check them out. Here's the website addresses:

http://www.igliving.com
http://www.gbs-cidp.org/home/cidp/cidp/
http://www.facebook.com/gbscidp#!/gbscidp
http://www.facebook.com/groups/319694351402565/ (this is cidp'ers sharing group on facebook)
http://www.facebook.com/FamFriends (this is Living with CIDP group on facebook)

Good luck everyone
mdolich56 mdolich56
56-60, M
2 Responses May 13, 2012

thank you for sharing and thank you for the links :)

Thanks for sharing your story and this information. I'm starting IVIG on Friday, hoping and praying it helps me get some relief from the pain.