new at gbs

    • Anonymous
      December 22, 2007 at 6:46 am

      Hi! i was diagnosed last week with GBS, following a resp. viral infection. Had the LP and CSF protein was ok so no treatment followed, doctor says this is a mild case. Symptoms don’t seem so mild…so I have questions from you guys, the veterans. my weakness, numbness and tingling is different day to day, sometimes hour to hour…legs will be weaker then upper body, right arm very weak & little pos. reflex, next day it’s the left side. this seems to puzzle the docs. Is this typical? i find the pervasive, overwhelming weakness difficult to describe to the doc’s frustration. all input appreciated and i’m so glad to find y’all !!!

    • Anonymous
      December 22, 2007 at 7:33 am

      hi & welcome,

      within reason all you say is typical. the lp can give false negatives. get an emg/ncv. it is always better to get ivig. rest lying down as often as you can.


    • Anonymous
      December 22, 2007 at 8:10 am

      hello, gene. you seem to have this gbs gig down pat from all i’ve read on the forums…i welcome your knowledge. i start over with a new neuro on the 26th, an emg / ncv is ordered before i see the doc. (orig. neuro in hosp. isn’t on my ins. plan). i worry that time’s a’wasting between dx and treatment regarding recovery. other frustration is that i’m a nurse and docs expect me to already know everything about gbs. (my husb. told the 1st neuro i’m a nurse). experiencing this is very different from knowing about it from a textbook. orig. neuro first said the pcp’s tx of viral inf. with decadron shot and oral prednisone made this a mild case, then on phone Thurs. said maybe pred. tx masked test results and sx’s since i’m weaker now than when i left hosp. (out 1 wk ago today).

    • Anonymous
      December 22, 2007 at 8:16 am

      Hello and welcome Lalacox. You can find a wealth of information and support here on this forum and get an extremely helpful packet of GBS information from the society if requested.

      One of the things about GBS that sometimes is unappreciated because it is so rare that doctors typically see only a small number of cases is that it varies a LOT from one person to another–in severity, in distribution and manifestations, and in how it impacts their life. Part of this is that the degree of activation of the immune system against the nerve components (intensity of the assault) is different and probably the target varies as well. Some people have involvement mainly of motor nerves and so are weak, others have problems with sensory nerves (can have pain and tingling) and still others autonomic nerves (and have problems with blood pressure, intestinal or urinary function, etc). Most people have some combination.

      I also had a “mild case” meaning that I had to walk with assistance, but could still walk and breath on my own. In asking this question many times because it bothers me so much, I find that most people with GBS have fluctuations in their symptoms based on what they do. There is neuromuscular inefficiency meaning that the muscles and nerves do not talk to each other well like they used to do. Perhaps only part of the muscle is getting the signals to act when the others act and so the parts actually work against each other (because the nerve signal to contract gets to the different parts at different times and probably different strengths than the body has learned and used before). If you “overdo” any muscle by working until it is tired, the amount of fatigue or weakness is way out of proportion to what you would have previously experienced. I told my doctors that it was like climbing a steep mountain to walk when it should feel (because it is) a flat path. It may be that when one side gets weak, you overuse the other side (because you want to keep living your life) and then that side gets weak and takes time to recover. Watch for this and if so, cut down on what you do on both sides so you do not ping pong. Yes it will be terribly flustrating, but rest seems to help healing a lot.

      FYI also, a spinal tap often is negative in the first week of Guillain Barre, sometimes up to 10 days into symptoms (because it takes time for the inflammation to lead to shedding of proteins and this is good thing). I have read that up to 10% of people with GBS do not have an elevation in the CSF protein. I have had two spinal taps and neither had an elevated protein.

      Classically, Guillain Barre is supposed to be symmetric, but this is also not the case as well, but the weakness is usually relatively consistent from one day to another. i would guess that that bothers your doctors, but it may be as above from trying to keep going. Instead of recovering in a few hours, it takes overused muscles of GBS patients sometimes days and sometimes even longer to recover. Like with running, the worse of the fatigue after muscle use can also be two days later. You have to relearn how to live based not only on how you feel today, but also how you expect you might feel in days. In my high intensity job, I have found again and again, if I overdo today, I will pay for it for days and days.

      Stay strong in spirit and develop lots of patience with the change in your life and the difficulties it is for others to understand what it is like. Ask lots of questions here, people are kind and helpful and have lived with this problem and so practical!!!.

      WithHope for cure of these diseases.

    • Anonymous
      December 22, 2007 at 8:40 am

      i think you nailed me in regards to the varying weakness…i do overuse the muscles trying hard to be independant. my husband helps me out of bed in the a.m.’s, helps me dress, makes the meals, helps me shower, etc.. i hate that. i have much to learn about patience and humility thru gbs. i’m only 51 years young and plan to be busy esp. after retiring. my job as a home health nurse is waiting for me and i can slide into a desk job, possibly part-time if need be. do we require a slower pace for the rest of our lives?

    • Anonymous
      December 22, 2007 at 12:23 pm

      I too had a mild case and started out with oral prednisone from my pcp. Then it progressed enough to put me in the hospital for 5 days. The neuro did not find anything other than slightly elevated spinal fluid and a monoclonal gammopathy. NCV showed slowed nerve responses. Went on to Mayo for a diagnosis of guillain barre. No treatment at that point as it was 3 months later. It was not a classic presentation, but I have the residuals everyone here talks about and it is easier to go with the gbs diagnosis than to forever wonder what is/was wrong with me. The weakness should gradually get better, but it will hit you every once and awhile. It IS a hard thing to describe to others because it is so overwhelming. Everyone one is different (except in the textbooks). Happy Healing — and glad you found us!

    • Anonymous
      December 22, 2007 at 4:21 pm

      Welcome to the family and it’s nice to meet you. Glad to hear that you are on the road to recovery.

    • Anonymous
      December 23, 2007 at 12:15 am

      Thanks to all for the help and answers to my questions. i will request the packet offered by the foundation. maybe it will have info my family will understand…they watch me constantly, waiting for signs that i’m “well”, as tho a switch will flip and i’ll be over this. Wouldn’t that be nice? thanks to iowagal for relating your story…we have several similarities! i hope the emg and ncv shed light on where i am in this and if i need ivig, i want to get on with it. Jerimy, thanks for your welcome and encouragement. Everyone is supportive and kind. frankly, i was beginning to feel isolated and i’m only about 2 weeks into this new diagnosis.

    • December 23, 2007 at 8:39 pm

      Hi Carla,
      I posted a reply on another thread you responded to, I hope you can find.
      Dawn Kevies

    • December 23, 2007 at 8:41 pm

      It is under need help by lla80.

    • Anonymous
      December 23, 2007 at 11:00 pm

      ‘do we require a slower pace for the rest of our lives?’



    • Anonymous
      December 24, 2007 at 10:47 pm


      Your very welcome. If I can ever be of any help please contact me. Take care.


    • Anonymous
      December 25, 2007 at 9:46 am

      I’m going from numbness / tingling in limbs to intermittent muscle cramping and soreness, even in my sides (rib cage area). Sometimes sharp, shooting pains. Is this a sign of normal changes in gbs? Don’t know if I’m in week 2 or 3 of gbs. Also, how might this affect emg and ncv tests I’ll have tomorrow a.m.? Dawn, I found your posts to me…can’t thank you enough!

      Merry Christmas to all!


    • Anonymous
      December 26, 2007 at 8:31 am


      looking over your posts i see you were Dxed w gbs, but didn’t catch if you were given ivig. it should have been given. for a variety of reasons, most not sound, it is not always done. how you feel will not affect your emg/ncv. who does the test is critical.


    • Anonymous
      December 26, 2007 at 8:39 pm

      Hi, Gene! No, no ivig done. orig. md couldn’t decide whether or not to order any treatment and i was too uninformed to know better. had the emg and ncv today performed by the new neurologist….normal results. he thinks i have transverse myletis of the spinal cord or atypical gbs. onset signs and symp. were classic for gbs as are most current symp.’s but i have normal reflexes, normal csf protein and normal emg / ncv (hence the “atyical”). ot / pt ordered and an mri of the spinal cord looking for inflammation. no treatment ordered such as ivig. sure hope i’m getting right info with md’s.

    • Anonymous
      February 8, 2008 at 1:46 am

      I’m really concern that after I had GBS in 2004. I can not be the same I used to be where I could run, weight lift, Do different types of exercises. now I can only walk short steps for 1 hour 1/2 half max. and then get tire and the feeling in the next day. I just get frustrated when I feel weak with no energy the following days. and the cold weather seems that I get more muscle pain. I don’t know where I want to be sometimes but I am looking for answers. I’m looking for hope to get 100% recovery. And seems that is not going to happen!

    • Anonymous
      February 11, 2008 at 12:18 am

      Hi, Sonny! Happened upon your post on my first thread. I’m sorry to hear you aren’t progressing as well as you expected. Have you had any physical therapy since 2004? I started PT last week and my therapist said one of his clients (a man) comes in 2-3 times a year for a couple of weeks of PT and that guy had GBS 30 years ago! Wow! 30 years and still gets PT about 6 weeks out of the year. The therapy helps keep the man’s strength and endurance up and he feels better overall.

      So, you might ask your doctor about something to help with the muscle pain and whether or not physical therapy would help increase your endurance and strength. Best wishes to you, Sonny!


    • Anonymous
      February 11, 2008 at 7:28 pm

      Thanks for advice. I never thought about getting phisical therapy again.
      I’m going to ask my doctor, is there away I can get phisical therapy again.
      Hopely this work Thanks again.