Questions about GBS

    • Anonymous
      July 28, 2006 at 9:52 pm

      Hi Everyone – I’ve been reading this forum this week, as my mother in law (age 67) was just diagnosed with GBS this week. This forum is a wonderful resource for information! I think she was lucky that she was diagnosed within a few days of being hospitalized. She started PP 2 days ago.

      I would like information about a few things. She is able to walk with a walker and assist of one with a gait belt. I sat with her most of today and saw quick changes in her condition. Feeling hot, to cold, to hot, to cold. Being alert – to going into waves of sleepiness – to the point that she fell asleep while eating dinner and dropped a cup of coffee all over herself and the bed. She was unable to remember my name the other day and today had forgotten that my father died within the year (she attended the funeral). Are these common symptoms? Are these symptoms of GBS or possibly due to the pain meds?

      Since she is on PP, will her muscles quit deteriorating/weakening or will some of that still occur until it levels off on it’s own?

      How can I find out if there is a local GBS support group in the Kansas City area?

      Thanks so much for all this great information and I wish you all good health!

    • Anonymous
      July 28, 2006 at 10:16 pm

      Your mother-in-law’s alertness is something the doctors should address with you. I remember being so sick, I couldn’t really process things very well at the worst times of the illness. While pain meds can do this, there is also something called institutional psychosis, a brief reaction to being in an environment without the usual stimulations of daily life, that can sometimes be described similarly. THis would be something to probe further with her doctors, since GBS isn’t thought to generally affect the central nervous system (brain).

    • Anonymous
      July 29, 2006 at 7:33 am

      hi marcy & welcome,

      regardless of source her signs are consistant with gbs. the pain med she should be on is neurontin. as long as she does not push herself, she should no longer deteriorate. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 29, 2006 at 10:16 am


      As Linda said, memory problems like your mom-in-laws is not generally a symptom of GBS. I have however seen many ‘older’ patients suffer from institutional psychosis, which is extremely distressing to see. I do think you should discuss this with her doctors to put your mind at ease. Wishing your mother a speedy recovery, and you and your family all the best.

    • Anonymous
      July 29, 2006 at 10:34 am

      Marcy ~ welcome. GBS can be very scary! This “family” will help where we can. About the memory thing; goodness, there are some large blanks in my memory:eek: And the hot/cold thing . . . GBS affects us all a little differently. I wasn’t hospitalized (this was before treatment was available), so my thinking issues weren’t environment related. To this day, when I am over tired, it is sometimes hard to remember things. See Gene’s response.

    • Anonymous
      July 29, 2006 at 1:51 pm

      Hi Marcy,
      I also have had problems with my memory and continue to do so. I was diagnosed at age 40 and am only 43 now, so I don’t think age is a major factor with mine. It could be related to medications but I’m not sure of that. It has become a joke that secrets are safe with me because I won’t remember them in an hour anyway. but seriously, I personally believe that somehow memory is affected. Just not sure how.

      take care and welcome


    • Anonymous
      July 29, 2006 at 4:33 pm

      Hi, I was 65 when I got GBS and the first week in the hospital is almost a blank in my memory, people tell me they came to visit but I don’t remember it, I fell asleep sitting in my wheelchair with my chin on my chest, and I’ve NEVER been able to sleep sitting up. I’d fall asleep in seconds. I don’t remember my kids coming to see me, but i do remember some things. I attribute all this to the meds I was taking (Morphine). I was in LaLa land for that week, but when they stopped giving me so much morphine, my brain started working better. I know it’s scary, but keep a positive attitude for your mom and let her know that things will get better. God bless you. PW

    • Anonymous
      July 29, 2006 at 5:05 pm

      Hi Marcy,

      Many people disassociate when faced with trauma. Situations which the brain cannot handle–such as the feelings of helplessness and pain assciated with the onset of GBS–can cause PTSD (Post-Traumatic Stress Disorder). Memory loss is not uncommon.

      I can remember very few details of my hospital stay or the first several months in the nursing home although some of the posters can remember everything.


    • Anonymous
      July 29, 2006 at 9:30 pm

      Hi Marcy,

      Welcome to the Forums.

      Memeory with my husband was a very big issue in the beginning and throughout the last 6 years. He didn’t even remember that he was wheelchair
      bound. He would tell everyone he was never in a wheelchair. He also couldn’t remember names of people he knew all his life. She’s only in the beginning stages and she will sleep on and off like she’s never slept before. The dropping of the coffe cup is normal for her condition, but she will improve over time. As Gene mentioned, pain is a big factor in GBS and she should go on Neurontin as soon as she can. The PP has nothing to do with her muscles getting better, the treatment is to stop the nerves from being damaged anymore.

      Around here GBS stands for “[B]Get Better Slowly”[/B], this can be a very long process. Some get better in months others take years.

      Ask any questions you have and we all will try to answer to the best of our ability.

      Wishing her the best.