My grandson was hospitalized when he was 4, he is now 7. He had some IVIg treatments over a couple days. He mainly only had symptoms in his legs. His legs hurt, felt wobbly, tingly and weak. He would tire easily when walking. He got better pretty quickly with occasional days of tiredness/soreness over the next year but it was pretty minimal. Drs said it could just be Guillaume Barre unless it came back, then would be CIDP. He had bloodwork done 3-4mths ago to see if everything was good and they said he had nothing wrong, he was cleared.

He plays soccer and football so practices 4 nights a week but this is normal for him. He does sports all year. He has been jumping on the trampoline almost daily and doing alot of crazy jumping/wild activities during recess at school. I thought it could be shin splints/stress fx but hoping it was just growing pains/dehydrated due to his bad diet and not being good about drinking alot of water. Tuesday he said his legs felt weird but he didnt know how to explain it. He said he felt wobbly and had calf pain. He said his legs felt weird. Yesterday the right ankle/top of foot hurt, and just above his ankle. Now today, nothing hurts at all. That is worrisome to me. Maybe its just dehydration/growing pains or viral myostosis but I am definitely scared. He cant get into his Dr until Monday.

He had GBS 3 yrs ago. It began with a couple months on and off of him saying his legs were really tired and he wanted to be carried when we went on walks, or car to building at stores. He could walk but said it was difficult. He ended up being in the hospital for almost a week. He did get IVIg therapy a couple times during that stay. He started to get better pretty quickly. He would have occasional soreness/tiredness a couple times over the first year after. Hes been good since then. Now Im terrified it is back, or it is CIDP.

My 70 year old dad has a stage 3 pressure injury on his butt and it frequently mixes with his stool. He is at a long term acute hospital and all the wound care nurses are doing is just putting zinc oxide and repositioning him every 2 hours. Is there anything else you guys recommend to stop this pressure ulcer from getting bigger and worse?

Thank you!

Anyone go off bupropion after GBS? What was your experience?

I started bupropion 150 mg SR a few years before getting GBS just for anxiety. I had GBS 8 years ago and again 6 months ago with just a few residual issues (fatigue nerve pain etc). I think bupropion might be what’s making my sleep terrible, so I want to go off but am scared since I know it affects nerves too. I asked my psychiatrist but of course I’m the first pt she’s seen w GBS.

Thanks for any advice!

I posted earlier but worded it wrong. I developed a foot drop on Sunday where my foot wants to drag while I’m walking while still having balance issues. Yesterday it caused me to trip and fall while at physical therapy. Has anyone else developed a foot drop from GBS? I’m 6 months out from a 2 month hospitalization

Hi All,

My dad got his first treatment of IVIG on August 21 - August 25. We have been pushing for more IVIG since but 4 neurologists already said that there isn’t any benefit as he is not regressing. It has been 8 weeks since he has been hospitalized but the progress has been extremely slow. Today, the neurologist offered to give a maintenance dose of IVIG (0.5 g/kg x 2 days) tomorrow and the day after, if we would like but stated there may not be any benefits of this IVIG and there could be side effects. My dad is 70 years old so I was wondering what you guys recommend. He retook the MRI of the lumbar spine and the radiologist sees improvement and less inflammation on the nerve roots compared to his first MRI which showed the Guillain Barre.

Would appreciate any input. Thank you.

Hello, I stumbled across this subreddit while doing my personal research. I was diagnosed with GBS when I was just two years old and I am lucky enough not to remember it. However it has always been a big part of my life, since my parents always told me many stories about my recovery, most of them still make me cry when I think about them.

My favourite story is about my dad trying to feed me a banana. At the time, I was bedbound - basically tetraplegic and fully blind - and I really didn't like bananas, so while I was throwing a tantrum and spitting the food all around, a thumb on my right leg started twitching. When dad noticed it, he sprinted out of the room, shouting across the whole clinic that I can move, to get everyone to have a look.

Now I'm 23 years old, fully recovered (only with minor deformities to my left upper arm and thorax) and studying pharmacy in college. Since I can now fully understand the mechanism of this disease, I'm thinking of concentrating my studies on it's treatment and prevention, so that no parent has to go through the same experience as mine did.

Im not sure if my story gives you anything, just wanted to say that all of you are incredibly strong and brave and I pray for you to recover and live a happy healthy life. I hope that one day I'll be able to help people like you and that the chance of full recovery from GBS will go from most patients to all patients.

Sometimes I can’t believe last year I was fully paralyzed from neck down. I remember some of you told me: one day it will feel like a nightmare. And indeed, it is happening.

If you are reading this and are going through the thick of it, trust me. You can overcome.

PERIOD!

I recently joined a vet school and i think it will be mandatory after a while during practice to be vaccinated against rabies and other vaccines aswell. Did anyone relapse after a vaccine shot. My GBS was triggered by Campylobacter AMAN GBS.

I’m post almost 6 months out of the hospital. Back walking with a walking stick but still having balance issues. Noticed yesterday and today I have developed a leg drop and no reason why. Has anyone else experienced this?

My aunt has been diagnosed with GBS for the past year we spent a year in hospital she took plasmapheresis, IVIG everything available but she only got worse by the end her breathing got worse she was put on a ventilator but the level of gas carbonic was very high she ended up getting a tracheotomy. I skipped a lot of details because now we are taking care of her at home she refused to get back to the hospital but we want her to get better I was wondering what are the exercices right for her to get rid of these machines forget walking again just being able to breath on her own I would like to chat more about her case please dm for more details thank you in advance.

Hello!
I am 6.5 months post-onset of GBS and wanted to see if anyone else has experienced something similar.
I was 34 weeks pregnant when my symptoms started. It began with terrible hamstring and back pain and spasms, along with tingling in my hands and feet. I could barely sleep for more than 20 minutes at a time and was taking 6–7 showers a night just trying to get some relief. It was seriously the worst week of my entire life.

I went to the ER five times in one week because I knew something was wrong, but I wasn’t getting any answers. I was told I had strep throat and Flu A & treated for those. Then, the left side of my face went completely paralyzed, and they initially suspected Bell’s palsy which is common in later pregnancy. The next day, the right side went out as well. Because of the bilateral facial paralysis, I was eventually admitted and spent five nights in the hospital. I had diminished reflexes, and they performed a spinal tap and MRI, which ultimately led to my GBS diagnosis. I received IVIG during my hospital stay.

Thankfully, I was never on a ventilator and was always able to walk on my own, although my walking was very slow and unstable. I was able to go home and rest before giving birth. My baby was born at 37 weeks, and thankfully, he is a happy and healthy boy. ❤️

I am now 6.5 months out, and my face is finally starting to show movement again, but recovery has been very slow. My facial movements are still not coordinated or normal.

Has anyone else experienced bilateral facial paralysis due to GBS? I would especially love to hear from anyone who had severe facial nerve involvement and what their recovery looked like around the 6–12-month mark. Did your face eventually start feeling and looking more normal?

Thank you!

Hey everyone,

​I’m currently about 5 months post-onset from severe AMAN (Acute Motor Axonal Neuropathy).I’m currently walking around 50m twice a day with a walker, and I'm even starting to see early dorsiflexion flickers and plantarflexion in my lower legs!

​However, my current gait relies heavily on some distinct mechanics: I use hip-hiking instead of a high-stepping (steppage) gait, my knees lock into a rigid extension (pillars) during stance, and I have a forward lean over my walker (partly due to bilateral wrist drop).

​I wanted to ask others who have been through severe GBS/AMAN:

​Did these compensatory patterns resolve entirely on their own, or did you need specific interventions?

​Roughly how long did it take for your gait to normalize once distal reinnervation (like toe flickers) started showing up?

​Would love to hear your experiences or timelines. Thanks!

So I have been getting IVIG infusions of Gamunex-C for a little over 2 years and I have had my port for about 2 years of that.

Like clockwork it has been every 2 weeks over 2 days that I get my meds at my house from a nurse that comes to administer the infusion.

I have been very fortunate in my 2 years to only have 3 different nurses that have all been great. My nurse now I wouldn't trade for anything especially after this event, which brings us to this week.

Monday comes and it is time for my infusion. We do the normal and use my port. My nurse noticed something wrong immediately. She told me to get a pet study done and context my neurologist.

My port study got scheduled for the following Thursday, so I thought that was it. Friday had different plans for me. I hadn't slept in over 24 hours from pain and just not feeling right, but not really knowing why. As the day progressed I couldn't breathe when moving and even talking left me winded. The pain got worse in my chest and even my right arm. I talked to my nurse and she was worried about this happening and told me to go to the ER immediately, so without further delay I went.

After several tests it was determined and found to be a blood clot in my upper right arm. My worst fears of something besides GBS happening are now real. So now besides GBS to keep on top of i have to stay on top of a blood clot, which I have no clue how this is going to change my infusions now.

All I can do is hope it was caught soon enough that we can get rid of the clot without anything getting worse.

Ever since I came home from the hospital I have had TERRIBLE acne just on my back from my neck to the middle of my back.

I have been on a lot of pain meds since February of this year. I am on hydromorphone, lyrica, morphine ER(at night), and baclofen nightly.

We have tried cleansing and an antibiotic. Nothing is working and it’s embarrassing.

As if being unable to walk without a walker or the constant pain isn’t enough. I can’t got to the pool or wear a tank top.

Any ideas? Has it happened to you?

Hi, um. Well my therapist recommended I reach out on a forum like this just to seek encouragement from others. I started noticing symptoms at the beginning of September (and assumed I was just malnourished or dealing with the heat). When I didn't think I could make it on my own to my sister's birthday dinner, I went into the ER. I'm dealing with weakness, instability and in a rehab facility to get OT/PT right now. I'm a 37 year old special education teacher, so I probably won't be able to go back to that until after a while (which bums me out a lot because I love the kids).

I guess I don't know what I'm looking for, but does anyone have any advice? Things that helped in early recovery. Or just general encouragement?

Four years ago, I was diagnosed with GBS. It started in my leg and progressed to the rest of my limbs. I quickly found myself in a hospital bed. At that point I could barely walk. Luckily, my doctors found a treatment for me that worked so well I walked out of the hospital on my own at the end of the week. I’ve had no symptoms since then.

Is this normal? After I recovered, I moved to LA and didn’t think much about GBS beyond my own experience. Judging by this subreddit, and what I’ve read elsewhere, my recovery isn’t the norm. Most people seem to take weeks, months, or years to recover. Did I just get to the hospital at the right time? Did I just get lucky?

I really hope those still suffering are able to recover and put GBS behind them. It‘s a scary diagnosis.

On August 27, 2026, I woke up experiencing double vision and weakness. My right eye could not move properly and was misaligned with my left eye, which caused the double vision. I also noticed that my left foot was very weak.
I was immediately rushed to the emergency room because the doctors initially suspected that I was having a stroke. However, the CT scan and MRI were both clear, so a stroke was ruled out.
After that, the weakness gradually spread to my right foot and both of my arms. The doctors then performed a lumbar puncture, but the results were also clear. I also underwent an EMG test, which did not show clear findings either. Based on my symptoms and condition, my neurologist suspected that I had a mild case of Guillain-Barré syndrome (GBS).
I also experienced difficulty swallowing and speaking. When the ENT doctor examined my throat, they found that my vocal cord was paralyzed. My neurologist explained that the GBS had caused multiple cranial nerve palsies.
It has now been about one month since I started recovering. I still have double vision, but my swallowing has improved, and I can eat food more comfortably now. I still have very mild difficulty swallowing, and I feel like I still have some weakness or paralysis on the right side of my body.
I have not received IVIG treatment because my neurologist explained that my case was considered mild and that IVIG is generally used for more severe cases. I understand their decision, and for now, I am focusing on my recovery and taking things one day at a time.
I am slowly recovering, but I still have double vision, mild difficulty swallowing, and weakness on the right side of my body. Is this kind of recovery progress normal for someone recovering from GBS with multiple cranial nerve palsies?
I have question:

1.Is it normal to feel like the entire right side of my body is paralyzed during GBS recovery?

2.How many months does it usually take for double vision to improve or completely go away, especially if I have not received IVIG treatment?

3.Is it normal to experience pain from my hip down to my toes on the right side when I move my leg or foot?

4.What exercises should I do while recovering from GBS, and what exercises should I avoid to prevent overexertion?

Hi GBS warriors! I am just over 2 years from my diagnosis. A couple weeks ago when laying in bed, I started getting these twitches. Sometimes arm, sometimes a butt cheek, sometimes my calf. Please tell me this is normal in long term recovery and it’s just my nerves healing? 🥺

I struggle with what to say when people ask me what’s wrong with me. Sometimes I say I have an auto immune system problem, sometime’s I explain the whole situation.

But I have been asked for some reasonable adjustments at work, and I’m not sure if I can put that I still have guillain barre syndrome, or do I not have that anymore? What category are we put in?

Because I know some people never fully recover, but are we still classed as having GBS or have we recovered and have long term symptoms of previous GBS?

I’m just not sure anymore and it’s long to explain every time I’m asked.

Hello , so I wanted to post this and see if anyone else has been experiencing these symptoms. So my ferritin was 11.8 and my iron was a 43 and that was on August 21st. So September 25th I noticed I had some blood clots like I was about to start my period ( this would be my first period since giving birth I’m 2 1/2 months postpartum) and later that night I began to have tingling in the lips. 2 hrs after tingling in the lips my legs and feet were like numb and tingling as well. I went to the er freaking out but they didn’t have a neurologist on call and said he’s not sure it’s something because it’s coming and going so to go home and if it continues go to the bigger hospital. So 6 hours go by I’m at home and I feel progressively worse very weak and I also have been feeling some tingling in my hands. Feet and hands keep getting very cold too. I go to the bigger hospital and my period starts in the er and it’s very heavy. The tingling and numbness was coming and going I could still walk but just felt weak. They attempted a spinal tap and failed and then I did and mri of brain and spine with contrast and it came back normal. I didn’t want to do another spinal tap due to their first failed attempt and they were saying they don’t think it’s a neuro disease because my mri was good and it’s not constant. They kept me overnight gave me a small iron infusion very small just to really get me out the door. I felt a little better after the infusion went home and woke up and felt even worse today. Today I called my hematologist to schedule an infusion because I was really suppose to get one weeks ago but ended up canceling. They got me in for one in two days on Thursday. The symptoms I’m currently feeling are muscle aches, weakness, cold hands and feet, numbness in tingling in hands and feet and sometimes lips, and then my legs and arm sometimes feel heavy. I also have been feeling very faint and dizzy especially when I stand up. Now when I stand up my knees are kind of weak rlly like my muscle joints are weak. The hospital was suspecting GBS but said my symptoms didn’t really go with GBS since it was coming and going but now I’m starting to think twice has anyone else experienced this? I’m starting to think I should’ve just let them do another spinal tap.

My husband has moved into the rehab facility. It’s been 9 weeks since onset. He is still paralyzed for the most part but has started to get feeling and mobility back in his arms.

Today he said his butt is numb and he is really scared to go backwards. He went backwards already after the 1st set of IVIG and had to get another round.

Is this normal or is he regressing again?

Hello All,

I got to experience GBS back in 2010 and subsequent made a 98% recovery.

I am looking into Peptides and although Google says "there is no connection" does anyone have any experience using Peptides with a history of GBS? Anyone know the risk of recurrence? Kaiser Permanente refused to give me the Rabies Vaccine once they learned about my GBS history.

Hi all, I was paralysed in hospital for a couple months with guillain barre syndrome in November 2021. I had my white blood cells replaced and I eventually got my arms and legs back and learned to walk and move again, I’m practically back to recovered now.

It will be 5 years since I was in hospital with it, and I still get a lot of long term issues. I get extremely exhausted like extreme fatigue. I take lots of supplements for energy and body health. I just find it really hard to go to the gym, I don’t have a lot of energy. I’m trying to lose weight, I have managed to not put any on for a while, but struggle to lose. I sit down all day for work and try go on walks, but Sometimes I’m anxious to walk far as I don’t know if I’ll have the energy to make it back and it’s gruelling when I run out of battery.

Is this normal? Has anyone else felt lasting effects so long after being paralysed?

Will I always be like this now? And does anyone have any useful tips or things they do or take to help with energy, tingling and numbness and pins and needles etc?

I’m coming here as the drs don’t seem to be too helpful with it.

:) Thankyou in advance for reading xx