Reply To: GBS/CIDP Survey

April 5, 2012 at 11:45 pm


Thanks for your generous comments. Concerning the above post: My GBS DID start with a flu shot but unfortunately, I was misdiagnosed by my neurologist resulting in severe nerve axonal damages. I did NOT receive either treatment of IVIG or plasmapheresis. That has been over 15 years ago. My GBS progressed into CIDP and I am getting regular treatments of IVIG today. I also got another neurological disease while in the hospital, Transverse Myelitis (also not diagnosed)…and a blood staph infection (staphylococcous aureus) but the exact infection not known, pneumonia, internal bleeding and in a coma. I had a temperature of 107.9 and BP of 44/0 by Doppler (would not register by cuff) – Long story short, after an EEG (brain scan) showed no activity, my wife was told to make arrangements for a post-mortem so they would know what “killed me.” Thanks to her NOT making those arrangements, I am alive today. She called our pastor instead, and when he arrived my family circled my bed and prayed for a miracle. I was spared by the grace of God! What the doctors did not know, and I found through research, severe cases of GBS can cause the brain stem reflexes to become paralyzed causing a false positive EEG. Through a determined will, and lots of therapy – I can walk with a cane (sometimes with my arm “loop” crutches when my back is out of whack).

All things considered, I am blessed to be able to do the things I can today; take care of myself, drive, and most things within reason…but still limited. The one thing I have learned over the last 15+ years is a strong spiritual and family love will heal, restore, and uplift life more than anything else on this Earth.

Take care.