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Guillain-Barre Syndrome GBS

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I was struck down by GBS seven months ago. I just collapsed in the street. No warning. I didn't know what was happening. I was scared. Got myself to the doctors straight away where he admitted me to hospital straight away. Just had over a week in hospital (I was lucky) but then as I came home, I was on my own to cope with this condition or should I say inconvenience. That's when the fun started. I had to have carer's come and see to my every need. Also had to have meals on wheels. (Only in my 50's, I found it so degrading). I have always been independant, now I was forced to be looked after. It's like starting all over again. Learning to talk, walk and do things. Almost going back in time when I was a baby. But, here I am back on the computer, talking, walking (very slowly, still with a stick) but getting there. It's almost like I was doing too much at the time, and it's slowed me down. But, now I take each day at a time. Life's so presious.

For anyone out there just starting to get back to normal. Just keep going and never look back.

5 likes, 274 replies

274 Replies

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  • caroline70988
    caroline70988 Guest

    Posted

    Just 2/12 years my back hurts I barley can get out of the bath tub maxing still have tingling in my feet really bad I can’t walk fast .
    • caroline70988
      caroline70988

      Posted

      Sorry I’ve had these feeling tongling and numbness sand paper this not normal is it this long?
  • pragya_25651
    pragya_25651 Guest

    Posted

    MY son 4 yrs old diagnosed with gbs 21 days back it’s acute and on ventilator from 1day . Drs finished 2 cycles of ivig and did trechestomy as well . Now they are telling to do plasmapheresis . Is it ok to do plasma ?or we will wait and later on will do plasma ?
    • Tarhealing
      Tarhealing pragya_25651

      Posted

      How is your son? I am so sorry that you guys are experiencing this! Have your physicians treated many GBS cases before? 
  • caroline70988
    caroline70988 Guest

    Posted

    I know how this feel sad to say the past few years there are more out there getting it . I was deterating 15 of sadness 10 going back fourth to hospital sick as dog begging them to help me same doctor said was all in my head . It’s 3 years in June . Can’t go fast run  still use my walker wheel chair for long distance other wise feel like I’m gonna pass out still feel like sand paper under my feet mostly when laying down my feet are up when I walk on them don’t feel it it’s stressful part of my life my dr screwed up lots going back to physio they have given wrong information for me to go back . Also this year been sick 8 times long period cause it a auto ammunition problem this year hate winter specially when ur bounded at home . I wish I can meet more people in Ottawa that have same issue go to the gym with me would be nice. Since been sick lots it’s taken a lot out me . Feel sad , depressed cause I push so much to do more get exhausted I met a nurse she had it at young age she told me she’s great now she said she never had it as bad as me . God wish life could get better healthier
  • nurse62
    nurse62 Guest

    Posted

    I am 2.5 years of from initial insult to my body.  Still weak, unable to run more than a few steps.  Breathing impaired. increased activity is slowed down from respratory muscle weakness.   At peak of weakness I  could not pick up my body off a bed easily, roll over, touch the ground , my feet, walk across a room, lift a cup , open a door, window, unable to drive.  the list just goes on.  Landed in the ER at one point because my airway occluded.  Docs sent me home, you know the usual....you have anxiety.  No kidding, I could not breath.  Breathing test finally performed and showed marked decrease in function.  This test was lost  and or overlooked by pulmonologist!!! if not for the GP catching this across the desk I would still be poorly managed.  This all occured 7 months after initial symptoms.  I toughed out all these symptoms alone and confused.  I was recovering from a cervical fusion when all of this began and many of the docs kept telling me to give recovery time.  I could not swallow easily either.  Neck muscles weak, back weak core weak, legs arms etc.  every test done except a spinal tap.  Neuromuscular doc informed me that in no way was that an appropriate test...he put me through a muscle biopsy instead.   OMG.  I have finally gotten into a new specialist, 2 years out from symptoms.  While I have improved from initial insult to body,  I am still very much affected.. just started PT a month ago because up until than I was too weak to do any PT.  I am being told by this specialist that this all points to GBS.  Once the next blood results get back she will decide if IVIG will be appropriate...2 years out?  Will this be helpful.  Anyone experience receiving IVIG this far out from start of symptoms?
    • Tarhealing
      Tarhealing nurse62

      Posted

      It's so tough when something clouds the diagnosis and you don't get the right treatment right away. I do think that more awareness is needed so that physicians understand that GBS causes anxiety and not dismiss GBS because they see anxiety. Glad you are finally getting the support that you need. My support was spotty during my initial GBS but I eventually found good support. I was fortunate to get good PT early on even though my physician support was lacking. I finally fixed that though but it would have been better to have it at the start. You can't ever give up! I'm not sure about the IVIG. I know some people get IVIG on an ongoing basis but not sure if it's with GBS or CIDP. It sounds like she is supportive so that is great. Good luck to you!

    • caroline70988
      caroline70988 nurse62

      Posted

      I had plasma then I felt it was occurring sent me back to oicu food plasma again . Since I was sick so much this year waiting on my stupid doctor to send me back to neurologist. Just lately feel my legs weakening again lots sand paper feeling more going up my leg lately feel always tiered so on
    • nurse62
      nurse62 Tarhealing

      Posted

      Thanks so much for the supportive words, it has been a long haul and continues to be.  
    • nurse62
      nurse62 caroline70988

      Posted

      Thanks for the feedback, hope you get this under control. Take care.
    • caroline70988
      caroline70988 nurse62

      Posted

      Sorry yes me to Hun it’s been rough now and again . Now I went and looked so strange bit I got into another forum on Gbs and Cidp but looks like foundation in California there helping people like us that have this . I tried after being in rehab there was this lady that started session to help others that have it . I did talk to her on the phone she said she didn’t have sessions any more for awhile there were not very many people that went she said plus she had it and had some difficulties so she stoped having these session .Think should look in the area your in see if there Is a place for all of us in your country or region. Your right after I got sick I had anxiety depression never had it before my anxiety gotten worse due to lots of stress but I trie and rest when I feel this way .
    • caroline70988
      caroline70988 Tarhealing

      Posted

      See u know I’ve talk to u about my gbs I’m sure positive I have copd getting tired of my doctor nerology 6 months there not calling me back . Just don’t know 3 Years is long issue being sick 14 times in 1 year still sand paper feeling numbness lower legs to feet toes your so right axiety plays a big roll after the fact so does depression . I had bladder infection wouldn’t go away 3 different medication then my go says it’s gone I say no I’m sorry it’s not . I get a flue shot guess what emergency says u got bladder infection blood in ur iron I said I no that but my doctor says it came back fine I told him I still feel I have it . Then I go in every day for 10 days sickening same dr says it’s all in my head for 10 days same emergency doctor he was being mean to me barley could walk I felt all my organs were failing my breathing . Pretty sad there so clueless about this disease cause it’s 1/ 100,0000 . . My doctor goes what cusp I’m going hughhhhh. Being one year hospital how can any one not be depressed axiety. How you feeling now I hope better hun . Try get as much as u can .
  • praveenciti
    praveenciti Guest

    Posted

    Hello

    I am writing this from a hospital next to my wife who will be discharged tomorrow after treatment for gb syndrome

    He has lost her facial expressions. Any one tell me how long it might take to get her smile back. Any specific exercises for facial muscules.

    Thank you.

    • Tarhealing
      Tarhealing praveenciti

      Posted

      Hi,

      I never lost my facial expressions completely but my smile was affected. I had physical therapy for my arms, legs, and core.  I also had physical therapy for my balance which was thrown off, as well. I worked on the facial muscles myself. I remember when I could finally whistle again. I kept working at it and one day I could.

      My doctor told me that nerves regenerate so if the damage is not too bad, the nerves will get better with time. I can still tell that the nerves in my face were affected but you can't tell by looking at me.

      I hope she will get better soon. Each case is different so it's hard to give a definite time. I will say that I was so much better after 3 months. Once I hit my worst time, I slowly got better and better with setbacks along the way when I overdid things. It's kind of part of the whole healing process. You have to have patience and be sure to give yourself time to recover. It can be frustrating at times. She is lucky to have your support. It means so much!

      Stay strong and good luck to you! 

    • thomas2567
      thomas2567 praveenciti

      Posted

      My facial drooping disappeared after few weeks but I was left with a little damage( can’t open my left eye as much as my right) but you wouldn’t notice unless I drew attention to it 👍

    • caroline70988
      caroline70988 praveenciti

      Posted

      Hi Hun I had gbs , Gillian Barrie syndrome paralyzed head to to was in there for year 5 months one hospital on life support transferred to another hospital the best rehab Center it’s gonna take time hun I ended up being depressed and high axiety . Your doctor will tell you lots physio lots of it after they cute mr of physio even though I still needed it  you will have to go to gym as I did it on my own I’m still after 3 years having issue numbness in my feet sand paper feeling it’s stressful and inside your body u don’t feel normal at first I was in and out lots the beginning my story is long but every day it’s a roller coaster might feel not to bad one day next down hill . Even this year I was sick 14 times . The key to be there for this help because I had my kids doing there best hard cause they had to work also . Every day I’d exercise my fingers hands facial exercise give me your email I have list of exercises I would send to you . I still can’t walk long distance sad to say with out wheel chair or walker I can walk on my own extent of how far then seem to feel I can’t . Every one is different depends on how sever I had the worst . This disease took away half my life feeling better a lot but still 40% issues I’m smiling and laughing so can he hun just lots of physio therapy lots of love hun any question feel free to  message me . Good luck hope you have wonderful day. For fingers use playdo  balls for his legs feet so on . Learning to get off on the bed you roll over turn legs out side of the bed and push up takes time even if he don’t want to push him to you gets those days I know hugs
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