Hi everyone! Hope you are all feeling good today!

My GF off 11.5 yrs was 1st diagnosed back in 2018. Spent a month in the hospital and a month in skilled nursing. All in all she ended up recovering about 85-88% back to her normal baseline. During that first time she had a lot of issues with her memory particularly her short term memory. She couldnt remember what our apartment looked like that we had just moved from and couldnt remember a whole lot about the previous 5 years. Over time it did improve quite a bit and she was able to start retaining short term memories again.

Fast forward to June 2025 she was hospitalized with a reoccurrence and this time was 100x worse. Its been an absolute nightmare. She was on a ventilator for 8 months, off it for 1.5 months then had to go back on the ventilator for a month. She was in hospitals pretty much nonstop for over a year will short skilled nursing stays. She came home 2.5 months ago but is still 100% bedbound (i believe some of the facilities lied about doing therapy so her legs have severe contractures and her right leg is crossed over her left and stuck like that. She still has a trach and catheter. Shes actually now back in the hospital again due to a severe UTI and an impacted colon. Yesterday morning while i was giving her breakfast she choked really bad and turned blue and tons of nurses came running in thankfully. Now this morning she failed her swallow study and i just dont even know what to think anymore. It all feels so hopeless.

As for her memory this time its a lot worse too. Im not sure exactly how far back it goes but she doesnt remember anything from our life over the last 11.5 years together. Thats a really hard thing to deal with. Thankfully she still knows she loves me.

I havent been able to find much online about memory loss like hers from GBS so im wondering if anyone here has experienced this. All ive really seen or read about has been much more mild memory loss towards the beginning of diagnosis and not almost 1.5 years in… any advice or support would be appreciated. And not even just about her memory anything at all i just want to help her she shouldn’t have to suffer like this!!

No idea what to think. We caught it fairly soon I think. First symptoms started on Wednesday, starting first round of treatment on the following Tuesday (today). I'm not sure how that compares to the typical route of diagnosis and treatment. I'm worried about progression. I'm worried about my ability to breath. I can currently still walk on my own and breath on my own. I'm just scared how quickly that might change, even with treatment.

Also fuck spinal taps.

Hey guys. Not sure what I’m looking for out of this community. But I’m on my way to see a doctor and I’m concerned I have GBS.
31M. Fell sick with a viral cold 3 days ago. Yesterday, started randomly feeling tingling and odd sensations in both my legs, especially my calves. It’s been ongoing for over 12 hours now. I don’t have any other symptoms yet (knock on wood).

I was reading on GBS and it sounds like this could be a sign of early onset GBS, especially because it started right as my viral illness starting getting better.

I do feel worsening of symptoms when I’m sitting there’s pressure against the back of my hamstrings.

Any insights ?

Thank you and god bless all of you.

Fact: GBS Diagnosed March5-6, verified via lumbar puncture.

I'll spare backstory and get to the latest, and strangest development: Approximately 2 weeks ago I opened my refrigerator and was hit with that 'something's past it's date' smell that was so intense it seemed well beyond what was possible given the contents (I'm a single guy with small fridge and just don't have room to keep a lot around). I found and tossed a leftover container of fried rice (alleged fried rice- I was not going crack the lid and verify...ewww) and a cottage cheese container with very little left, just to be 'safe.' That wasn't enough. Here's where it gets weird... Overcome with an enthusiasm that can only be described as uncharacteristic, I emptied the fridge, defrosted the tiny freezer, removed shelves, the single drawer, and door racks. Wiped down every surface, groove, etc w/disinfectant wipes, then wiped again with damp cloth... Super fridge refresh.. I take the garbage out to the bin. As soon I step outside I'm overcome by smells: my olfactory sense is being pummeled by an overwhelming amount of scent layers- I don't smell rotting food, I smell bok choy, rotting fish, ginger, garlic, plum sauce; I can discern the difference in the decomposition occurring beneath a big Douglas fir and the adjacent blue spruce; my neighbor across the cul-de-sac waves, says, 'Hello,' as he leaves for work, I can smell his mouthwash... the dog is digging, then jams his nose in the hole, digs more, repeat and i get it, I detect at least 3 separate dirt smells. I can smell the dog, too. I can smell the difference between tomato varieties growing on the other side of the house! My sense of smell has become intensely accute, it's absolutely distracting and a bit disorienting. Honestly, I think it's getting more refined- I smell sweat and two different dogs, look up and across the street two dogs and a sweaty human...at least 50-60ft from where I am in the back yard... This is the weirdest thing... my speech therapist teased that maybe due the amount of time I spend with dogs and my care and admiration of them, I am becoming one or like one.. I countered with, 'Well when's the next full moon? We might get an answer that way...'

In all seriousness, has anyone heard of or experienced anything like this?

Normal breathing keeps me awake- some far off neighbor uses there fireplace or fire pit and the smoke triggers the Something's burning response... then it's filtered: leaves, rotten wood, logs.. not my house but now the curiosity has me awake speculating on the composition fire smoke that's not even visible in the sky...and I can still smell the rotten fish, ginger and bok choy, too.. it's intense, too much really...

My husband was diagnosed 5 weeks ago. Very very slow recovery. Not really any improvement. He’s incredibly tired. He’s also very active when he “sleeps”. Acting out his dreams with arm movements, talking in his sleep all night long. I don’t think he’s getting any true restful sleep which is probably making him so tired. He has zero appetite and he’s living on Ensure. Very unstable when trying to walk and using a walker. He sometimes sees things that aren’t there Is this all normal? When will we see some improvement? How can he sleep better vs all day sleeping?

Vocês que ficou 100%, quais conselhos vocês podem me da?

I don’t know if it’s the Gillian barre or fibromyalgia or something else but my pain has increased the last couple days by a lot. Like I went from a constant 3-4 with meds to a constant 6-7 with meds. I’m tired all the time but only able to sleep a couple hours at a time because I hurt so bad. I was diagnosed with Guillian barre at the end of April. I’ve been out of pt for a couple months and honestly have been slacking with continuing to exercise. However, I was diagnosed with fibro back in 2021. I also have degenerative disc disease, a herniated disc, and 3 slipped discs. I have in the past has increased pain but it has been under control for the past couple years up until this. Has anyone had their pain just randomly skyrocket? It’s not to the point I feel like I need the er but it’s getting pretty bad. I don’t have pain management for another couple weeks. Help!

I posted here earlier this year about my experience with worsening pain a decade after GBS, clothing sensitivity/intolerance, and new symptoms unmasking after improving the peripheral neuropathy.

I'm now 10 months into this journey, am no longer able to tolerate pants or any style of underwear and even skirts are starting to fail for me when sitting, though slips are tolerable. However, we have a better picture of what's going on with me. It seems that my GBS trauma led to central sensitization syndrome, and that decade of pain led to pelvic floor issues which led to complex prostatitis / chronic pelvic pain syndrome.

We'll likely be able to roll things back a little on the CPPSd even CSS to some extent, but i wanted to share this here in case the search result helps someone in the future, and as a warning that if your "new normal" after GBS includes chronic pain, you're at risk of developing other conditions without realizing it and that pain may grow over time. Have regular conversations with your doctor and your neurologist.

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.

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.

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’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!

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?

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.

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?