Anyone else have GBS of the abdomen/stomach/trunk/head (not limbs) ?

    • Jet8
      August 22, 2017 at 12:51 am

      Thank you in advance for reading this and thank you to everyone who contributes to this site that helps so many people. I’m very glad I was able to find my way here. I’m looking for anyone who has experience with or information about Guillain-Barre that affects the abdomen/stomach/trunk/head as opposed to the limbs.

      I am a 34-year-old male. Back in 2009 when I was 26 and a full-time student with no medical issues I woke up one night feeling sick and threw up multiple times from a stomach virus (or food poisoning). Instead of getting better though I got worse. For about a month it felt like I had the flu at times and something was cutting me up on the inside. When the dust settled I was a shell of my former self. I couldn’t feel my entire midsection. The only thing I could feel was a constant sickness. I lost the ability to flex any of my abdominal muscles. It was the oddest sensation, like my midsection was just gone. I also lost feeling in the top of my thighs, my back, part of my throat, and my head. I couldn’t eat food and felt extremely sick 24/7. I had a gastric accommodation scan that showed very abnormal results. My gastroenterologist said my problem was nerve damage and that he thought I would improve though it could take years. My neurologist at the time wasn’t sure what was going on and said he dealt with arms and legs.

      It is now 8 years later and while I have improved I am still not able to function. I was able to start eating some solid foods after a few years but I still feel sick all the time. Feeling has returned to a lot of areas where it was lost. I can flex some areas of my midsection/abdomen now but not completely as they are weak. My voice has come back from the area of my throat that was damaged but it starts to hurt if I talk a lot. I feel a lot of soreness everywhere as I improve.

      I recently saw a new neurologist and had a nerve conduction study done that showed evidence of a generalized axonal peripheral neuropathy and after some other tests and blood work he referred me to a university research hospital. The neurologist there diagnosed me with Guillain-Barre or a Guillain-Barre like variant (retroactive to 2009).

      I am wondering if anyone here has experience with or information about these rare types of non-limb Guillain-Barre symptoms? I’d also like to be a resource for anyone who has recently had something similar happen to them as I search for answers about this condition.

      Thanks for reading this and thanks for your help.

    • GH
      August 22, 2017 at 1:43 am

      I’ve never heard of such thing, but would think it is not, strictly speaking, GBS, but some other variant, simply because GBS is fairly well-defined.

      To clarify, I assume you don’t actually mean “stomach,” but the skeletal muscles of the midsection, is that correct? Can you sit up? GBS and similar variants affect more than limbs. Usually, it starts in the legs and moves upwards. A serious case which moves up into the torso will cause one to be unable to sit erect.

      I am glad to hear you are improving. I take it you did not have any IvIg, which is the usual treatment for GBS and similar conditions? I don’t know whether that would make any difference at this late stage.

    • Jet8
      August 22, 2017 at 4:37 pm

      Thanks for the reply GH. I never had any lvlg but my current immunologist and neurologist both said if I had it when I first got sick it could have helped, though they can’t say for sure. They said if I have a recurrence that it would be an option. No one I saw in the ER thought about it as a possibility when I first went after getting sick in 2009 because my arms and legs were fine. Per your question yes, the skeletal muscles of my midsection were affected. So for example if someone told me to to try to suck in my gut I wouldn’t be able to but I am able to sit up fine. I think maybe something with the stomach is involved too. They say damage to the gastric nitrergic neurons (whatever those are) occurs in people with post viral/infectious gastric dis-accommodation. I asked about stem cells but was told they are too experimental at this point.