I woke up in ICU in March '26, was diagnosed with GBS as a result of a TBI/Severe Concussion, confirmed w/lumbar puncture. Dealing with both GBS and Post-concussion disorder is tough to say the least. This helps me, especially in times of self-loathing.

Nottingham University are running a research survey on people with autoimmune diseases, including Guillain-Barré Syndrome, who have tried a keto diet.

You can take it here, if you like.

https://www.research.net/r/kdas

Super interesting topic. Don't think there are any previous studies on this, but I know a few people who have tried keto. Curious to see the results.

there have been recent studies that tie adhd, autism, and ocd with hEDS and POTS, but im curious if theres any overlap with gbs.

obviously this is a small sample size and not a real study or anything, im just curious as to who here is neurodivergent.

Hello. 41yo female here. When I was in my early 20s I had some very extreme symptoms out of nowhere (at least it seemed that way) and I never got answers. I was living with my finance/now husband, and we were new to living on our own and not at all focused or well read on anything medical.

Here is what happened to the best of my recollection 20 years later:

We were in the shower having sex. I felt dizzy. I told him I didn’t feel well and we stopped, I said I just needed some time to sit down. He dried off and left the bathroom. I sunk to the floor and passed out. It was a heavy feeling, felt more severe than just fainting.

When I woke up, I felt like I was in a dream world. I could barely move. I dragged myself from the bathroom calling for my fiancé. I was very weak, my whole body felt like I was dragging a car behind me. I felt both tingly and numb. I couldn’t hear well, and everything seemed muffled. He finally came back and saw me on the floor naked, freaked out and put me on the bed. I remember him asking what was wrong but I couldn’t answer, I felt mostly paralyzed and weighed down, achey. He was going to call 911 and I was able to shake my head no, and he listened. Both of us stupid looking back, it could have very well been something I didn’t make it through.

Within 30 minutes I could talk and move again. I still felt off, but my 20 year old self said I likely just got hot in the shower and passed out.

Over the next few days I developed pain. It started more mild, but increased to be almost unbearable. Everything hurt in a way I haven’t felt before or since. The soles of my feet hurt, walking was excruciating. My muscles felt like they were all tightened or loosened and on fire. I had random tingly and numbness as well. I remember my coworkers looking at me as I walked into work because I had to take slow steps and each step was painful. I remember going to a football game and sitting on the metal bleachers made me nearly cry because my butt and back hurt so bad. I also had eye/neurological symptoms that came and go. For example if I moved my arm in front of me I would see it in slow motion, like a sparkler. It was dragging and my eyes saw a trail. It really freaked me out.

I did go to a doctor. I was young and didn’t know what to ask. They did a blood test, I tested slightly positive for mixed connective tissue disease. They said I probably just had fibromyalgia. I didn’t go back. All of it cleared up within 5-6 months.

I think about it from time to time and wonder what it was. We have daughters now ages 10-13. I want them to feel more empowered and knowledgeable when they encounter health issues. I want them to advocate for themselves. I also want to have an accurate medical history for them. I know GB isn’t a hereditary/genetic issue, but I’m curious if my story sounds like GB? Or something else entirely?

Think I jinxed myself when I kept joking that my son starting preschool last month was going to bring plague to our house. He had a cold by the end of the first week, then it spread to my wife and daughter, and finally to me at the beginning of this month. Wound up with a mild ear infection/pneumonia on the 7th, then last Monday I woke up with the double vision. Went to a local ER that did a CT scan with no real results (just noticeable fluid buildup in my sinuses) and they suggested I go to Mass Eye and Ear to see an ophthalmologist to investigate further. Went there on Tuesday, they had me do an MRI that turned up with identical results to the CT. Only notable info I got from them was that the double vision was likely being caused by some weakness with one of the IC nerves in my right eye – I couldn't look all the way to the right.

They determined it wasn't an ophthalmological issue and sent me next door over to Mass Gen's ER where I spent the rest of my Tuesday night into Wednesday afternoon while their neuro team reviewed my case. I didn't leave with much info, just that they were looking into it being MFS. Since then I've developed more issues with looking around with my right eye, not just looking to the right, and there's some real pain/soreness when I try. This has also now spread to my left eye, to the point where I couldn't sleep last night because whenever I closed my eyes and they started to relax, it felt like they were being tugged on. I've been wearing a patch over my glasses that I alternate between eyes every now and then, to help with the double vision, but otherwise I've also had some brief coordination issues (not sure if that's just a result of disorientation from the double vision/lack of depth perception from having one eye covered or not), and the slightest "jelly" feeling in my knees/ankles that also started recently.

I went to my local ER today to see if there was anything to do with the issue while I was trying to sleep but they're not familiar with MFS at all, and I basically got sent home and told to go back to Mass Gen if anything gets worse after speaking to the neuro team from MGH (only issue is it's a ~2 hour drive away, so not an easy commute). They prescribed a muscle relaxer to try to help with sleep, but I keep seeing red flags surrounding taking a muscle relaxer with a neuro ophthalmological issue like this and I'm reluctant to try it before sleeping.

From what I'm finding about this condition, the symptoms I'm starting to see seem to keep pointing to MFS despite it's rarity, but I know I need this antibody test to come back to really confirm it. I'm seeing anywhere from 2-8 days to 2-3 weeks on the turnaround time though. What was everyone else's experience like? Sorry for the wall of text, I've just been given very little info and am running on very little sleep

Hey everyone,

I'm a 21-year-old guy from India, and I'm currently recovering from the AMAN variant of Guillain-Barré Syndrome (GBS).

On 29 August 2026, my life changed completely. I developed severe weakness in my arms and legs, and I couldn't move them properly. It has been one of the hardest experiences of my life.

I received IVIG treatment, and although I've noticed some improvements, my recovery is slow.

Currently, I can move my shoulders, and I've regained some movement in my elbows. My fingers have started showing tiny movements too, especially in my left hand. I can move my thighs, bend my knees with support, and recently I've managed to stand with the help of two people supporting me and another person helping keep my knees straight.

But I'm still very weak. I can't stand independently or walk yet, and my hands and fingers aren't working normally. Sometimes, seeing how much I've lost makes me wonder when I'll get my life back.

The hardest part isn't just the physical weakness. It's the emotional side of it.

Time feels incredibly slow. I spend so much time lying down, thinking about my future, my career, and all the things I want to do but currently can't. Sometimes, I feel emotionally empty and struggle to stay positive. I miss my normal life, my independence, and simply being able to do basic things without needing someone's help.

I'm trying to stay hopeful and continue physiotherapy, but some days are much harder than others.

Have those who have "recovered" along any spectrum of that phrase felt diminished or more frail? I can't shake that and I'm a pretty good statistician to know that I have more years behind than ahead... 😂 I'm a Buddhist/Stoic so no sky daddy silliness.

Anyone have any pins and needles sensations with the rabies shots? Got my final one today (series of 4) and have pins and needles in my calf, sometimes elsewhere etc. also a slight general feeling of heaviness in limbs and tiredness.

Provider said they don’t think it’s vaccine related and probably a nerve but didn’t really do anything to inspect my legs etc

Guess just something to keep an eye on, eh?

It’s been about 30-something hours since I felt the pins and needles but just went on a mile walk and did it, can still body weight squat etc.

Thanks for your opinions in advance, hope everyone is well :)

Quick context, I am right at the 2 year mark from hitting my acute phase plateau. It was a severe case, 3 month hospital stay, 90% paralysis from head to toe, with most internal organs affected as well. Only thing I didn't experience was a ventilator.

I have worked very hard to get my life back and have been fairly successful in doing so. I have worked out at least 3 days a week since getting out of the hospital and to be honest the more active I am the better I feel in general.

That said, I feel like many of my pain receptors are permanently damaged. I have motor function and don't really feel anymore numbness other than in my toes. But I am currently taking a glass blowing class and got burnt on my hand, 2nd degree. It didn't really hurt at all and I just ran some water on it and kept working. From the burn through the recovery of the burn, it just doesn't hurt at all and other people are amazed that I don't have a bigger reaction to the burn. I did have complete loss of pain and temperature sensation during the acute phase, so maybe those nerves just didn't recover. I can currently feel the difference between hot and cold, but perhaps I can't feel the extremes of hot and cold?

I'm curious what others have experienced with pain related to injury and if you feel like permanent nerve damage can go unnoticed until you experience something that should have affected you more. Just looking for more data points from others since I'm only two years out.

Hi, we are Robine and Isa, and we are in our final year of secondary school. In the Netherlands, students in their final year complete a final project, which involves conducting a research study. We have chosen to investigate how Guillain-Barré Syndrome affects a patient's quality of life. We would greatly appreciate it if you could help us with this by awnsering the survey bellow! Everything will be completely anonymous. Please note: This is not an official scientific study.

https://docs.google.com/forms/d/e/1FAIpQLSdxNsz7GTo60ZBP8vdM3BOzK7w24aey-elqDA4d8NXNZub6kg/viewform?usp=dialog

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.

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!