Update and Brain Fog

    • Anonymous
      March 24, 2007 at 8:28 pm


      I’ve not been around for quite sometime…life’s been interesting. I’m just 2 years post GBS and am currently in treatment for hepatitis c.

      I was wondering if any of you are having memory issues? I vaguely remember reading (back before this site was hacked?) about memory problems. I still seem to have them. My neurologist doesn’t think that they’re related to the GBS; he thinks it just stress.

      I’m not so sure that I agree with him.

      Physically, I’m exhausted most of the time, but that’s due in part to the hcv treatment. Mentally – heck, most days I’m not sure that there’s even a brain in my head. The more tired I get, the less I am able to make any kind of a decision. That’s not something new, either. It was that way before I started hcv treatment.

      Any thoughts?

      And thanks…

    • Anonymous
      March 24, 2007 at 9:11 pm

      Since I developed CIDP 4 years ago at the age of 20, my memory has deffinitly not been the same. For me I guess stress is a possibility, but I and others around me have always blamed my memory problems on pain medication. Though, now that I think about it even when I was off of all my pain meds. I still had problems remebering things that I should not of forgotten. It is very frustrating and sometimes I feel like I am going crazy.


    • Anonymous
      March 24, 2007 at 9:25 pm


      UR right & he is wrong. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      March 24, 2007 at 10:42 pm

      Thanks, Gene.

      I thought as much. 🙂

      I’m going to make an appointment to talk to him again. He’s tickled that my reflexes are good, but to my way of thinking, there’s much more involved than just my reflexes.

      For instance…I have an odd sensation that is centered around the lower part of my rib cage, kinda like there’s a large elastic band around my middle. It’s more noticeable when I’m laying down, though I’m aware of it regardless of position.

      Does it have anything to do with my having had respiratory failure during my gbs episode? Dunno. No one seems to be able to tell me.

      I’m tired of being looked at like I’m a hypochondriac. I’m not – I’d just like some answers, you know?

      I do apologize. I’m not usually such a grump.

      With regards,

    • Anonymous
      March 24, 2007 at 11:02 pm

      My brain has been out to lunch for a while. I’m not sure if it is the CIDP or the meds or what. In my case, it is nice to have something to blame it on besides old age.

      Jim C

    • Anonymous
      March 25, 2007 at 7:52 am

      Kate, no, you’re not a hypochondriac. I feel that way all the time. There is always some new pain, twitch etc. and after a while we tend to second guess ourselves wondering if it really is related to GBS.
      As I read and re-read the posts it’s seems many of us have the same issues. If we didn’t have these problems before GBS there is definitely a possiblility they are related in some way to GBS.
      Find yourself a Dr. who will really listen. Keep a journal of when you are experiencing more or less discomfort. Believe in yourself and listen to your body. I’ve had the tightness around the mid section and others have mentioned it.
      And if you want to be a “grump” you are entitled every now and then.
      Take care,

    • Anonymous
      March 25, 2007 at 3:45 pm

      😮 Katie, my midsection enlarged and tightned as my first symptoms started. it then got harder and bigger as i gained weight during my recovery. i looked about 8-9 months pregnant. some people have even asked my hubby if we had a baby because they saw me and thought i was expecting. none of the drs. i have seen will address the issue and i take that as they dont know what caused it and dont want to admit it. pre-gbs i weighed 115lbs and now 2 years post-gbs i weigh 172lbs. i believe some of the meds have put it on me and of course not eating healthy. i can understand all the dianamics around take in more calories, do less movement and the calories go to fat but my stomach was hard as a rock. i started recieving acupunture and she said it was not normal fat, that there was no circulation going on in that area. she has been doing acupuncture on my stomach and gave me a lintament to put on it and use a heating pad on it. she also changed my diet alot. for about 2-3 weeks now i havent been eating any meat except fish and i have all my veggies cooked. only food that digests easily. im also drinking chinese teas . i have lost about 3 pounds and my clothes are fitting differently. now i can pinch a roll of fat because it is becoming softer. my idea is that the gbs hit my mouth, and throat, and my intestines and rectum so what about the digestive tract in between. i know this isnt a pleasant topic but it is a reality some of us deal with daily:o . i always felt girted and couldnt hardly reach my feet to wash them good or massage them. it is easier now. im hoping to see more improvement as time goes on. i did not have respiratory failure tho. so i think mine is the digestion.:confused:

    • Anonymous
      March 25, 2007 at 7:46 pm

      Hi Katie

      I had come to the conclusion that memory issues and GBS went hand in hand – especially after what I read before the Board was hijacked.

      Not only do I recall being unable to make a decision, simply remembering that there was a decision to make was a toughie. I too thought that ‘the brain had left the building’, so to speak.

      As to hypochondria, I actually, eventually, asked my GP if I was a hypochondriac and the answer I got was ‘no’.

      Oh yes, I remember (I really do!) reading often about people who felt that they had an elastic band around their midriff.

      Neither you nor Emily are going crazy.

      God bless

    • Anonymous
      March 25, 2007 at 7:59 pm

      I also experienced the “stiff” midsection by the bottom of my rib cage. I described it as turning to “plastic” Mine lasted aproximately 6 months beforeI noticed one day it was gone. I could “knock” on it. My Dr never had an explanation either. I was never on a vent and my abdomen was not diistended.


    • Anonymous
      March 25, 2007 at 10:13 pm

      On the old forum we had many posts about what we called “the Band.” It was a feeling of someone tying a rope around the mid-section or just above & pulling on it. I think it might have had something to do with damage to a band of nerves running around that area; but in any case many of us know what you are talking about. I had it terrible for the first 6 months to a year, then now only when I sit in my recliner in a funny position for too long.

      As for the memory issue, I know that it is caused by GBS/CIDP, as the topic comes up just way too often for it not to be a residual. I used to teach math & English before I got sick & now I find myself wondering what the words are for a “coat rack”, a door knob”, a coffee table,” get the idea? I also can’t remember how to spell words at times that used to be simple for me. Or remembering people’s names? These are what I forget the most…

      I used to think it was neurontin, or others blamed other meds, but I now believe that it is a residual caused by these illnesses. Maybe the stress at the time was too much to handle? Or maybe caused by our residual fatigue? Who knows, but just learn to accept it as another loving residual, I have…

    • Anonymous
      March 26, 2007 at 12:06 am

      Hi Katie Jo,

      Memory problems, searching for words etc. are a very common problem post GBS. Not sure if it’s something done to the brain by the disorder, the medications, or possibly just stress that does it.

      I notice that mine has improved (I’m 3 yrs. post GBS) a lot, but I still do have times when it seems to get worse.The good news is that you can learn coping mechanisms to help you get around this.

      For example, I tend to lose track of time easily now, so I have the alarm on my cell phone set to remind me before meetings etc. I keep paper and pencil in front of me when I am on the phone, so I can write down any important information. I also keep a TO DO list and keep track of items on my computer program Outlook calendar. I carry a small notepad and pencil, so I can jot down things that are important.

      These things have become second nature to me now, so I usually don’t notice that I have a problem, unless I find myself grasping for a word during a conversation. I’m getting pretty good at using a synonym if the word I need doesn’t immediately come to mind.

      Hope these little hints help you too.

      Best wishes,


    • Anonymous
      March 26, 2007 at 7:48 pm

      Oh my, there really are lots of people with this. Up here in the North country we call them Brain Farts. Diane

    • Anonymous
      March 27, 2007 at 2:30 pm

      I like to refer to this situation as “I am in screen saver mode.” I also use Outlook for reminders all day long at work – and some at home too. Just remembering to take a dose of medicine is difficult. Post-it notes are also a life saver for me.

      Oops, forgot to finish this post – I walked off and just came back 30 minutes later and am now hitting Submit Reply. My, oh my. 😮

    • Anonymous
      March 27, 2007 at 3:38 pm

      Thanks, guys.

      It’s nice to know that I’ve not lost my mind!

      I do appreciate the support and knowing that others have experienced the same things helps immensely.