GBS and non epileptic seizures

    • Anonymous
      April 26, 2014 at 10:18 pm

      I have had gbs for about 3 and a half years and was to the point of using a cane rather well. One night about a week ago my roommate heard me fall and I was face down on the floor rigid as a steel bar. I was taken into the local emergency room where I had another four seizures before they finally flew me to a larger facility. While on the helicopter I had another seizure. I was put into a paralytic state for four days during which time they removed my gall bladder. When I awoke I remembered nothing about the seizures but did remember going in for gall bladder removal. The neurologists found no reason for the seizures at all. My liver and kidneys began shutting down as well due to a form of toxicity caused by the seizures. Anyway I am wondering if anyone has ever heard of a connection between seizures and gbs? It has been a truly hard road for me with the weird form of gbs that took two years to get a diagnosis from mayo clinic in Rochester and now the seizures have set me back at least 8 months. Truly frustrating.

    • April 27, 2014 at 6:58 pm

      Thanks for the detailed explanation, sounds like you have been through the ringer on this. My first thought is go to a “center of excellence”. I saw from your earlier post that you were at the Mayo Clinic in Rochester, it’s a very well recognized place for GBS/CIDP treatment, but not listed as a center of excellence. The closet one (approx 75 miles from Rochester) appears to be the University of Buffalo School of Medicine and Biomedical Sciences here:

      Department of Neurology 100 High Street
      Buffalo, NY 14202
      Phone: 716-859-2024

      Adult Care: Gil I Wolf, MD, Professor & Chair, Dept of Neurology, SUNY Buffalo
      Nicholas J Silvestri

      Your symptoms are uncommon and would be difficult to diagnose for even the most experienced doctors. If not Epilepsy, the most common trigger for seizures is insufficient blood oxygen, followed by post traumatic stress. You might want to look into Autoimmune Inflammatory Vasculitis as a possible cause (restricts blood flow). Some info can be found here: and

      Keep us posted on how you are doing.

    • Anonymous
      May 3, 2014 at 7:21 pm

      As of right now it is being called status epilepticus. My pcp doctor said it simply means I had a seizure that lasted more than 5 minutes and also had memory loss lasting longer then the seizures themselves. The term sounds an awful lot like epilepsy but 2 different neurologists ruled it out. Got at least 3 appointments next week so I’ll keep ya updated if they can update me on anything. I did get a theory from an old doctor who said it could’ve been the mind and bodies way of attempting a reset because of the gbs. Sounded strange at first but the body is capable of some amazingly strange things.