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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

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  • Rosiedays
    Rosiedays Guest

    Posted

    Hi lovely people, I'm so happy to hear so many of you doing so well xx best wishes to those still struggling xx my dear friends daughter is currently in hospital recovering from gsd. She's 4. She's been in hospital for 2 weeks and is very slowly making progress thankfully.

    I'm supporting my friend the best I can from another country and she has other immediate support but I'd like to find her some active support groups if there are any. Useful link etc.

    Thanks

  • casy41912
    casy41912 Guest

    Posted

    I was in the hospital for over 2 months couldn't walk talk but now I am home and so tired of it . Always tires and can't get anything done

  • kim96044
    kim96044 Guest

    Posted

    I'm not sure where to start.  About a year and a half ago I started having a lot of foot pain, tingling and burning.  I also noticed that I had a lot of muscle pain all over my body after working a very physical job and I was exhausted.  Then I started stumbling and falling not able to get up.  I went to the hospital and they did suspect gbs but ruled it out and sent me home.  Within a couple days the pain went from my hands and feet moving up my entire body.  I had the burning pins and needles all over and extreme pain, lots of different pains like someone hammering nails into my bones that would bounce around my body rapidly, cold sensations like someone was dipping their hands in cold water and flicking it on me, and pains that felt like electric shocks coming out from my spine.  I had trouble talking and swallowing.  I could barely walk.  This lasted about 3 weeks before it very slowly started to ease up but never went away completely.

    I followed up with my doctor after my hospital visit and he tested my for lupus, thyroid, lyme disease and ra.  Everything came back negative according to him.  He suspected at this point that it was ms.  Due to crappy insurance I was not able to get tests that he wanted to do.

    Since my jobs required me to be on my feet i had to cut back to part time and quit one of my jobs because I can't be on my feet for more than a few minutes before the pain comes.  The longer I'm on my feet the worse I get.  It travels up my legs like it did when it first started and them the stiffness comes sometimes causing me to not be able to move my legs at the hips and I feel like someone bashed my knees with a hammer.  When I get real real bad my speech and swallowing becomes difficult.

    I finally got to see a neurologist today and he told my it was gbs.  Everything I have read about it says the pain goes away after a few months but it hasn't for me.  The slightest touch can be very painful even just my feet touching the floor, putting socks on, and even rubbing my feet to make them feel better.  The more I'm up and moving the worse it gets.  I no longer stand in the shower because it hurts too much.  

    I question whether its gbs.

     

    • thomas2567
      thomas2567 kim96044

      Posted

      Kim GBS takes many forms and different levels of severity I was first diagnosed in 2012 when I had full paralysis and then again in 2015 when it only came back mildly. I have been left with about 4/5th power and flexibility in my muscles and joints and the tingling in my fingers and toes never leaves. I'm left with bouts of exhaustion now and then but can usually feel them coming on and try to totally rest. If your doctor has said it was GBS it usually is especially if you have had to spine lumber puncture to confirm.I hope things improve as they usually  do after few mo this although first time I needed imunigloben to improve but not second time. 👍

    • caroline70988
      caroline70988 thomas2567

      Posted

      Me to Hun it’s just about 3 years in June 2018 still today I feel so week like I’m got flue some thing weak .But still fighting  exercising got to keep it up to I’m tired of feeling this way .
  • caroline70988
    caroline70988 Guest

    Posted

    I’m a patient gbs 1 year in the hospital on life support and blood transfusion ( plasma ) I can’t even explain I got depressed over the years and anxiety Wichita I’m taking medication for . I push my self some times if I over do I feel week .As a few in here have said I can only walk slowly still have tingling in my feet and numbness .I hated the civic except 3 times had to go in isolation cause I ended up getting a bad case of diarrhea due to the patient beside me.All my kids family even dr didn’t no sad to say I was so so I’ll went to the hospital 10 times yes I said 10 times ambulances every day as I was deteriorating.I want to cry cause this doctor was sane one telling me I’m depressed it’s all in my head still didn’t admit me . Till the last day I calapsed there was no me even paramedics said this is bull s**t once I calapsed that was it and still took another 10 days for them to do a spinal tap this was not forgiven for me I’m trying to do the best I was barley alive in and out had to give my oldest son to make decisions for me .I had really great people came only to help bath so on felt so good the water after the baths I still barley could get up walk the hospital well guess I over stayed my welcome even though I was not ready so I had Psw that I’m close friends with now and cherish every moment that they stayed with me.Being on life support not being able to talk I was so angry my kids by my side I cried could even write with my hands I would try and try .I am walking slowly still can’t walk long distance went back to the gym last week .I also don’t barley eat still on medication .Im worried all today feel so week when I walk I don’t feel the tingling just when I’m layjng down so I put my socks on because I had contained swelling in my feet ankles ,legs and had gotten blood clot on my lungs 2 months after going home another 2 week in the hospital with blood thinners for 8 months .You know ,Know one will understand till they get Gillian Barrie Syndrome sort of like having ms as they say .Felt like I was dead when I did get up I would say Carolyna ur strong we can fit this come on I fought ,Fought still had physio for s year helped so much but once ur on ur own u have to focus I get depressed and anxiety because of it .Today I feel my bones acking feel so tired and scard right now the best thing is go back to the hospital see tomorrow I don’t want to fall back I just started feeling bit better besides the tingling the slowness if walking so I have to take my walker some times if it’s long distance for shopping my wheel chair.Its so sad I don’t want to die I love life I’d give my heart to many people .The thing is all of us need to exercise even if u don’t and they said I was never a loud to take flue s**t again cause I had flue shot and bladder infection that I fought for 4 months blood in my iron so both flue shot and bladder infection triggered it off. Let’s stick together and fight back exercise ever day even though your tired we need to do this .We have to stay strong minded fight back .3 years in June is a long time fighting g this but my doctor knows I’m still not well .By the way the only way they can find out if u have it is spinal tab so I was not in my right mind to make decisions my poor oldest son had to give the right to be on life support because I kept passing out .But the doctor said I had little lung breathing so even though was a night mare he saved my life for all the loving from my children thank you for saving me . Even the head of chef of staff came to apologize to me I said u can’t do that it’s the stupid dr that I had every day at the hospital same one that needs to apologize not very good dr he didn’t make good decisions about me sorry he should of been a doctor I won’t for get him even part of the civic the nurses were ignorant .Till I went to isolation.They were amazing then chef of staff asked me if I’d like to be transferred to General I said plz plz take me he said Carol tomorrow will have ambulance transfers u to the general .I was so at peace finally no more trig was done no life support that was a night mare the suction’s I’d cry for nurses at the civic they would say ur not the only patient u will have to wait tied me up it was night mare felt like I was in a Max turning and turning .I pray every day just want to know will these feelings tingling so on will I get any better then this ? God bless every one .
  • samLondon
    samLondon Guest

    Posted

    I had all the odd symptoms a week after a stomak virus. Tingling in left feet moved up to hands , arms face and head and right leg and feet with numbness. My body tempretite dropped . I had cold feet and hands. Nausea and no appetite . Constipation a diariah . Ruin retention and urgency. Lost of weight. Sever headack and mental confusion plus lost of balance. Vertigo And temporary lost of hearing . Sever neck and back pain.

    Dry eye and mouth and no sweating for three months . I'm getting better slowly . Brain mri was normal waiting for spinal mri yet and was told by Neurologyst it is most probably gbs.

    • thomas2567
      thomas2567 samLondon

      Posted

      Sam you have all the symptoms I had when I had GBS if it is stay positive and things will get better slow but sure 
    • Tarhealing
      Tarhealing samLondon

      Posted

      Sam, I had much of these same symptoms as well after the Tdap vaccine. My neurologist thinks that I had the Miller Fisher variant of GBS. It did get much better for me too so hopefully you will continue to get better.

      I had special therapy to help me get over the vertigo and balance issues. I can still tell that this happened to me but am thankful for all of the progress I have experienced over time and with that initial therapy.  It can be such a tough road but stay positive!

    • samLondon
      samLondon thomas2567

      Posted

      Thanks for reply Tomas . Did you have any ali e or brain mri done? My brain mri was fine . I'm waiting for spine MRI result to come trough .   I am fearing that it might be ms. As I know there are loads of symptoms similar between gbs and ms. I'm lucky if it's gbs . The neurologist has not fully diagnosed me , he said it might be gbs and the LP has not be done yet.

    • samLondon
      samLondon Tarhealing

      Posted

      Hi 

      Thanks for reply . Did you have brain and spine mri done? I'm haveimg some Aphasia ( saying wrong words as speaking) as well end though my brain mri was normal . I'm waiting for spine MRI.

      Did you have this problem too? 

      I think my symptoms are very similar to yours.

      I'm hopping mine would not be ms😞

    • Tarhealing
      Tarhealing samLondon

      Posted

      I had a brain, neck and spine MRIs. Then they repeated them to rule out MS. I had no lesions so no MS. I actually had slurred speech at my lowest point but I was having numbness in my face and tongue so it was difficult to speak correctly. It's like my tongue would get too tired while I was trying to speak. They did an MRA to rule out stroke. I had great vessels so no stroke. I did have brain fog though. I noticed that I had to focus really hard on writing letters at that time. It's like I knew what I was writing but I had to think really hard to make my hand write it right. It made me feel like I had a head injury or something. But I was always checking myself to make sure I could still think ok. It was so scary! That part all got better for me pretty soon thankfully. That part bothered me even worse than my difficulty walking with the weakness in my legs or the weakness in my arms and hands. I saw a specialist who helped me with my balance and vertigo and that made the brain fog go away. The nerve issues in my face were affecting the way my eyes were turning and it was slightly off but causing me to have vision and balance issues. Have you had trouble with your eyes at all? My hearing was affected at my worst point too and the pressure and pain in my head was unbearable!

    • samLondon
      samLondon Tarhealing

      Posted

      Oh my god I'm glad I found you here, all your symptoms are very similar to mine. The problem with eyes in my case was sever pain in both eyes ,  when I moved them ur was worst . I had blurred vision but all eye issues went away after couple of weeks. 

      My vertigo only lasted a few days with my eyes moving constantly .

      I had lost of balance for pretty three months. 

      I had my first symptoms on 6 Aug starting with sharp pain in my left tight . I am still having muscle atorphy in that region.

      The brain fog and the headache with the feeling of my brain is shaking inside my body was the worst bit.

      Did you have joint pain?

      Now it's around 4 months almost all

      Symptoms gone apart from my knee pain and a little bit of headack .

      I wish you get better soon but there are other worst disease than gbs. 

      And many thanks for reply .

    • thomas2567
      thomas2567 samLondon

      Posted

      Yes I had spine Andy brain MRI done the brain one was done again just last year and came up fine but I had a a lot of damage shown on spine MRI 
    • caroline70988
      caroline70988 samLondon

      Posted

      I had mri beginning nothing there they made me suffer for 10 days I was fading away the sad part till I ca lapsed took them I was on life support and took them 7 days to do spinal tab rediculious my kids thought I was dying because doctors said she might dye was that saviour one year in hospital think that tells it all .
    • Tarhealing
      Tarhealing samLondon

      Posted

      My eyes felt like they were moving like that too! That was the weirdest thing and hard to explain. I did have pain. It was excruciating but finally got better. I am not having to take anything now. Hope you keep feeling better!
    • thomas2567
      thomas2567 samLondon

      Posted

      The vertigo was really bad at the time five years ago for me but it’s ok now....my finger tips and toes still tingle but you learn to live with it and if I’m tired my balance can be dodgy as well....I find the secret is to keep active but not overdo it and plenty rest when I need it......I still get anxious at night before I fall asleep but you learn to control it and if I cool down it fades  

       

    • thomas2567
      thomas2567 Tarhealing

      Posted

      if I’m tired I still suffer from the brain fog and fell I need to prethink everything before I say it I was also left with facial nerve damage on my left side causing my eye to be smaller than the right side but only noticeable if I point it out 
    • thomas2567
      thomas2567 samLondon

      Posted

      I found watching the videos of Morton Weighuist who played for Celtic(even though I’m a rangers fan) on YouTube helped me imensensely as you can relate to every pain of movement he has and at each stage of his recovery 
    • caroline70988
      caroline70988 samLondon

      Posted

      I have so much joint pain it’s all in my legs knees . I caught Phnamonia 7 weeks ago been on antibiotics finally after the 3 antibiotic is working but have now had hearing issues in my right ear popping cracking giving me high anxiety and can’t eat . .I had it bad 1 year hospital this summer thought I was doing better but I feel like I’m up and down all the time so stressful. My feet still tingling bad and I can be so bad and annoying . Think after 2/12 years I’d be feeling yeaaa it’s over but it’s not . God please help!!
    • samLondon
      samLondon caroline70988

      Posted

      Dear Caroline 

      I hope you get better  soon. I've read with gbs only time can heL it. You are lucky you did not have abnormal mri. I'm freaking out for my spine result.

    • thomas2567
      thomas2567 samLondon

      Posted

      Sam try and not worry about things you have no control over and worry makes GBS symptoms worse so fingers crossed for you 👍

    • samLondon
      samLondon thomas2567

      Posted

      Thanks darling.

      Do you mind me if I ask where aboutvon your spine you had the damages? Were they inflamed spinal cord or demyelition or other damages?

      Thanks 

    • caroline70988
      caroline70988 samLondon

      Posted

      I had an mri and nothing was found took them 10 I was still walking after the 5 times ambulance it was so scary thought I was dying really I was after 10 day thrown out hospital telling me I’m nuts in head so on I passed out in front of the ambulance I.n my apartment in a comma took them another 7 days to do spinal to tell me I had gbs I was in civic life support 4 months and transferred to great hospital that took care of me General hospital the best but now when got home Psw for year I’m not the same person my feet still tingling sand paper some times one day is better then the next . I don’t know about those mri they said they found nothing but spinal tab gbs was on plasma twice . ICU 4 times you guys are luckier then me this summer I was sick 2 but over come it now 7 week phnamonia now 5 weeks blockage in my right ear having crazy anxiety attacks depression . Just don’t feel me any more so in fair yes I know others have it bad with other issues . But I’m going on 2/12 years I was paralyzed from neck to toes my whole body still was half paralyzed for 1 year half . Don’t understand from an out going grandma to an nothing . I love my kids so much my grand kids I want to do more I can’t I try any stress around me I don’t feel good . Going to try go to the gym tomorrow see if I can knock some stress so on away. Good luck Sam 
    • caroline70988
      caroline70988 samLondon

      Posted

      All I know I tell my dr that the hole is bigger and my back is sore it’s harder to walk really if there is one good dr in this world . I mean I like my dr but half year later neurology says there closing my file when I’m still not well I’m tired these dumb dr what I went through sad
    • caroline70988
      caroline70988 samLondon

      Posted

      There is lots similarities gbs ms but many say there different kinds of gbs I don’t know even half them all I know I wish I can move on it’s still with me in side my body I don’t feel me still .
    • caroline70988
      caroline70988 thomas2567

      Posted

      I feel to I forgot things so on my eyes are ok I had it tingling in my face to rest I was paralyzed . When will it get better are any one still exercising going tomorrow weather sick or not I got to put . Exercising you guys some of the big key hugs to all 
    • caroline70988
      caroline70988 samLondon

      Posted

      I had a spinal tab near my butt in between tail bone the worst now the hole gotten bigger I had mri very beginning blood work nothing was showing up till the spinal tab idiots so mad . I’m angry I’m sorry just they took long time I probably could got this before I was paralyzed 1 year hospital not like 3 to 6 months
    • thomas2567
      thomas2567 samLondon

      Posted

      Hi Sam,

                       The damage was all to the lower spine the damage was done to nerves where I had general wear and tear there.

      Tam

    • caroline70988
      caroline70988 samLondon

      Posted

      Hun in so much what has happened I had some issues but was out of it they tried to hide it from me because every day for 10 days 2 times a day I was litterely in the hospital ambulance and all.I was so sick so sick inside my body can’t even explain I’m sure you guys had similarities? I was also slursng my words I was walking but slow I used a walker there . This doctor same Doctor for 10 days telling me it’s all I’m my head I’m having axiety and depression .Then few times he would go so what you want me to do your waiting my time I literally cried same .10 day that night I was throwing up barley could move call ambulance my boy friend two ppl in building came up I was so bad ambulance came I fell lost every movement in my body all I remember ambulance driver pales was down said this is f**ken rediculious after that more less was in out my mind . No movement felt tingling in my head also lately more in my feet head and hands going to my doctors again to my doctor tomorrow it’s been 2/12 years this shouldn’t be happening..so at this point I couldn’t make any decisions and it was either go life support cause it took them 7 days later to do a spinal tab yep should been done long before soon found out my son had the rights to do he said yes other wise I was dying . I was spunky women did every thing I still can’t said to say . All I. Can say is and also had plasma 5 times in icu. We don’t know when things are going to happen life is to short . I hope to go back to the gym. I’m not aloud to have flue shots any more I had the fact I had blood transfusion worries me . Give me luck tomorrow. 
    • caroline70988
      caroline70988 samLondon

      Posted

      I had spinal tab after being rejected from the same dr over over for 10 days till after calling the ambulance for the 6 time I calapsed in front of the ambulance I had no signs of movement oh yes after 10 days suffer I was so so so sick yea they admitted me I was literally on life support still took them another 7 days to DJ a spinal tan rediculas had head chef didn’t even understand wtf he said with the dr I’m so sorry miss Harkes for all you been through all I remember passing out again. Still suffering 2/12 years  1 year of that in the hospital rest with Psw sad . Sad 2/12 years I’m still feeling more pins needles and sand paper my head recently my fingers legs feet been feeling more tingling always had it in my feet but been not feeling well phnamonia hard time it won’t leave just not my self high anxiety depression due to all this I’m not sure what to do  any clue any one?
    • Tarhealing
      Tarhealing caroline70988

      Posted

      Hi Caroline! I am so sorry that it took so long for you to get help like you needed. I had trouble getting help and having someone treat me with dignity but did not have as severe of a case as you did. I kept rushing to the ER, desperate for help, just to have doctors drug test me and accuse me of slurring my speech on purpose to get attention. There are good physicians out there but I kept running into some real duds. I hope that you have good physicians and health care providers in your life now. It was so helpful when I finally found a great neurologist and physical therapists to help with my recovery. It was so therapeutic to rid myself of negativity which included switching my primary doctor and original neurologist. I'm glad you are on this forum because this has had such a positive impact on my recovery. Have you searched in your area for any GBS groups? I found one several hours from me and was able to learn of a good neurologist from them. There were a range of other GBS survivors that spanned from milder cases like mine to the most severe. It was great to connect and continue to learn from others in person too. Stay strong and don't give up that nerves can continue to recover for quite awhile. Keep searching for those positive doctors if you haven't found them yet.

    • caroline70988
      caroline70988 Tarhealing

      Posted

      Hi Hun I’m glad you found a group . The thing is that neurologist closed my file I have not fully recovered I feel alone my doctor is great gave me recommendations on physio cause as you know we should exercise . I found a lady in the summer she had gbs she said barley any one went so she decided to stop plus guess she had other issues . I’m so glad your hear just told my dr I’ve been sick with phnamonia had ear issues so on I finally cleared up came back on Friday .  Just after 2/12 years you would think I’d get better I can walk slow I still can’t walk long distance . Got depressed high anxiety because when I get sick takes long time to get better . Well I’m going to demand them sending me back to neurologist that’s rediculious.. Thank you for messaging me I live in Ottawa do you also Hun? I’m trying so hard to be positive . I understand that dr that said that I hope you reported him . I will never for get the same dr for 10 days at emergency gave me pills said I was ding dong . When I got back into the hospital that last day he kept on apologizing chef staff came with him . I said may be u should re think about being a dr your the one who’s ding dong hahaha little chuckle . I’m glad you wrote me I hope we can still talk hope every day all of us get better . Would be the nicest Christmas present ever 🤗😊

    • Tarhealing
      Tarhealing caroline70988

      Posted

      I'm actually from North Carolina.  It sounds like you have come a long way considering it took so long to get help but I know it's frustrating to experience lingering issues.  I hope you will keep getting better though.  I do think that past nerve damage makes it harder for recovery from any illness.  That's what I have found.  Glad you got a chance to speak back with that doctor.  Maybe you enlightened him and he will be more receptive to any others in the future that may have GBS. 

       

    • caroline70988
      caroline70988 Tarhealing

      Posted

      I so agree think that could be it but the funny thing is I got sick with this phnamonia ever since then I’m getting recurrence tingling in my head and hands more in my feet . I literally thought omg omg it’s going just exercise more but I stopped cause I’ve been so sick . I’m scared it’s gonna come back. This time I might not make it . But I try think of other things I’m glad I’m speaking to you making me feel bit better . Thank you for that I’ll see my doctor tomorrow again . Funny my dr understands he had it at the age of 17 his parents were dr so they caught it on time . Thing is those 10 days I might not been paralyzed neck to toes . But it’s done that 1 year in hospital met a few nice people . If you have face book please add me. I wish you a good night thank you for speaking to me .

      Moderator comment: I have removed the email address as we do not publish these in the forums. If users wish to exchange contact details please use the Private Message service.

    • Tarhealing
      Tarhealing caroline70988

      Posted

      My Neurologist says that it is rare that it could come back. He said that it is normal for the immune system to flare up when there is another illness.  I think those damaged nerves don't respond as well to stress on the body as they did previously hence some of the tingling and weakness. That's what I have noticed in the years following my GBS that happened 3 years ago. Of course, I'm still concerned when I overdo things and notice the numbness or tingling in those same places and I will never get another vaccine as long as there is any risk of recurrence. I have met nice people too and that's the positive of this whole thing for me.

    • caroline70988
      caroline70988 Tarhealing

      Posted

      Yes hun i have to at the rehab centre as I was recovering .So it will be three years for me end of June this year so .I do have lung issues have diverticlious and no I can’t either have another flue shot either.I had plasma 2 times due to reoccurring issues they didn’t want to take that chance sad to say . So what it is is that nerve damages so I’ve been sick a lot due to copd . I’ve had phnamonia been fighting it for 7 weeks went dr again on steroids and antibiotics again really stressful . Sorry for writing you late I was at the dr few hours yesterday due to all this got my medication boy friend had stop car threw up since been sick was bothering my gbs my dr said .one minute I had tingling sand paper feeling cause been sick was worse felt tingling in my head and hand. Seems summer was quit bit better for me and exercising which I haven’t done cause being sick this is so in fair what do we do next Hun?
    • samLondon
      samLondon Tarhealing

      Posted

      Hi

      I did not have eyes issue apart from pain for couple of weeks and blurry vision which went away. 

      My spine MRI came back normal so did my brain mri.

      I still have pain in my left leg and left arm, neck and backack.

      I am still constipated . Very mild brain fog and joint pain.

      Do you mind if I ask you which one of your symptoms are still with you ?

      When I bend my back I feel little electric shock around my spine .

      The lower back pain is still there ?

      I have muscle hypotonia in both specially left leg. Did you have and hypotonia?

      My neurologist is planing a pet scan to find out the damage and the cause of attack with a huge loads of blood tests!

      Thanks 

    • caroline70988
      caroline70988 samLondon

      Posted

      Hi Sam Hun , I always have lower back pain cause I had spinal tab when I was half awake that how they determined my gbs sad to say. Umm my legs always pain specially winter my back near spinal tab and I’m not fast I’m walking I’m slow get things done slow but always push , push. To do things I’m trying walk long distances still can’t with walker yes but sit down lots I use wheel chair if I don’t have any one around .some times lately been getting tingling in my hands more then usually think it’s because I had diverticlious funny your dr did he not give u stole soften when I was in hospital they did after cause they put me on pain meds and lorazepam im on lerica and other stuff . I was life support trig and was worst night mate of my life.think older we get harder I’m 56 so don’t no .i had plasma also I’d advise every one to if they have it depending severity of it .
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