• September 2, 2014 at 9:13 pm

      According to a post of a few months ago, quite a few people have memory problems who have had GBS. From little incidents like forgetting where keys are, to some really serious situations. I am quite a few (18years out to be exact) and feel like this is getting worse. I’m not old enough to have age related symptoms, so I feel perhaps it’s the Neurontin I take. Many have shared that they suffer from realist dreams that are frightening, constant sleepiness, or as I feel, memory or a sensation of “fuzziness” ” for lack of a better word. I know it’s always an age joke (forgetting) but it seems more prevalent to those who have had ” our disease” . It does affect various centers of the brain for the nerve endings to be quelled , so perhaps the drug itself might be causing these symptoms. I myself went from a very high dosage, to a very low dosage upon release from the hospital. Could this be a link (getting worse) to going from residuals of GBS to CIDP ?

    • GH
      September 2, 2014 at 9:40 pm

      It may be the drugs, but it is not the GBS directly.

    • September 23, 2014 at 3:22 am

      I have to disagree. There are plenty of GBS patients who complain of memory issues regardless of the meds they take. I am not on anything that would cause this, was not on anything during my illness or recovery and yet I had awful memory problems since day one of onset and still going on. Although there are meds that can interfere with memory, I find it too much of a coincidence that so many patients complain of this very thing. Look for information online about this very problem.

    • November 28, 2014 at 8:45 pm

      My memory was horrible for a while. Much of the time, I couldn’t even remember simple words or what some things were called. It’s much improved now but it still isn’t back to where it was and I took myself off all meds two years ago, so it isn’t med related memory issues.

      I think the explanation may be fairly simple. When GBS hits and destroys the myelin, it cuts off communication between the body and the brain. Hence the paralysis. Nerve regeneration only happens at an average rate of 1″ per month, so if you had a severe case, it can take a long time to get fully ‘hooked up’ again. And of course, there’s always a chance that some things aren’t going to reconnect, or not in the same way. That’s just my personal theory, though. I’ve nothing to back that up, really. Doctors told me that GBS doesn’t effect the brain. Well not directly but it certainly does effect the nerves going to it.

      In MACKAY1’s case though, it’s been 18 years, plus s/he is still taking meds, so it certainly wouldn’t hurt to look at what the Neurontin might be doing to him/her. In an effort to feel better and clearer, it’s probably worth at least looking into.

    • January 17, 2015 at 5:46 am

      I have a hard time remembering things, but I attribute it to ,not only, the residual of chronic fatigue, but also, sleep apnia. I have a hard time remembering things, but I attribute it to ,n ot only, the residual of chronic fatigue, but also, sleep apnia. I have a hard time remembering things, but I attribute it to ,n ot only, the residual of chronic fatigue, but also, sleep apnia.

      What were we talking about?

    • February 12, 2015 at 11:44 pm

      Matt, you are hilarious! 🙂

    • April 18, 2015 at 12:02 am

      I am only about 18 months out and have had some issues with my memory. I have heard that GBS can affect your cognitive abilities if it is bad enough. My case was caught quickly and I have had a fairly quick recovery but seem to have quite a few strange lasting effects to include memory as one.

    • May 3, 2015 at 2:39 pm

      Unfortunately I remember everything, including the bad propofol fueled dreams.

    • May 21, 2015 at 2:01 pm

      Ditto on the memory problems. Also, I had a great deal of word-finding issues, would say, “Ummmm…” a lot, like I hit a skip in speech. And that was after I was finally released from hospital and off all meds. It was accompanied by a physical sensation – felt like my brain ran into a solid black wall. Don’t know how else to describe it.

      It has been 3 years for me and it is finally improving. Guess it has been for the past year or so. Now, it happens in a less dramatic fashion when I’m tired.

      GBS may not directly affect the brain but I challenge anyone who says it has no effect whatsoever. GBS attacks the nerve myelin, which facilitates communication between the brain and body. The actual brain matter isn’t damaged but the nerves going to it are.

      I think the only people claiming that GBS does not affect the brain are those who haven’t had GBS. 🙂