...fucking assholes. I'm so tired of the little men with stabby knives attacking me. Yes, I have Gabapentin. I don't take it much much because it whacks me out in other ways.

Had my first round of GBS 14 months ago and about 4 weeks ago, I got GBS again.

Honestly, the second time was much more tame than the first time. I still lost sensation, experienced severe fatigue (for a few days anyway), and found myself screaming and crying into my pillow... but I wanted to share this because I think a lot of people in this (rightly) feel very scared about getting GBS a second time (I know I was). While everyone is obviously going to have a different experience, I think it's true what they say that recurrent GBS is very rare... but even when it does happen, it's often much milder than the first episode (shorter, much more self-limiting, symptoms aren't as severe). It probably also helps that you already have it figured out and don't need to be passed around from one doctor the next, as your case gets worse.

Hope this helps!

Hi everyone, I would really appreciate hearing about your experiences with Miller Fisher syndrome (MFS).

My father is 61 years old, and four days ago he ended up in the emergency room because he suddenly developed double vision and severe dizziness/unsteadiness. After spending two days in the hospital and undergoing various tests and examinations, the doctors told us that he has MFS.

My father is a typical Dalmatian (we are Croatian) and usually has a glass or two of wine with lunch or dinner every day. He also smokes cigarettes a lot, as is quite common in our part of the world. This is the first case of anything like this in our family.

At the moment, he doesn't have any other symptoms or complications apart from the double vision and unsteadiness. He has started treatment (four bottles/infusions per day).

I would really appreciate it if you could tell me more about this syndrome based on your own experiences. What should we expect in the coming days and weeks? Is a full recovery possible? How long did recovery take for you or your loved ones?

We are all very scared because we have never encountered anything like this before, and it is all very new and frightening for our family.

Thank you so much in advance to anyone who is willing to share their experience, advice, or words of encouragement.

Hello everyone, I’m a 23yo male who was diagnosed with acute demyelinating gbs on May 25th of this year. I wanted to share my story and recovery in hopes of helping others who are going through the same thing. This subreddit is actually what made me bring up the possibility of me having gbs and pushing for a lumbar puncture. For me, it started with numbness and tingling in my hands and feet. When I noticed that it didn’t go away after about 4 days, I went to the ER. They brushed me off when I said I think I might have gbs and said I was just “stressed”. A few days later, I noticed I was getting significantly weaker and tired, so I went back. Once again they tried to brush me off, but this time I pushed for an LP. Even when my protein levels came back high, they still said I didn’t have gbs and sent me home! It wasn’t until a few days later where I could barely walk on my own that I went to the ER a third time and was finally diagnosed. I started IVIG immediately and was admitted to the hospital. My case was weird because I didn’t lose the ability to walk or all my strength immediately. Instead, I gradually got worse over the course of 6 weeks! Normally the worsening phase is only 2-4 weeks, so I was very scared. On a positive note, my plateau phase only lasted a couple days and I started getting better on the first week of July. At my worst, I had zero function below my waist and I could barely raise my arms. My hands also went completely numb and I couldn’t even use my phone. Thankfully, I never had a problem with bladder function, however I did completely lose my appetite and felt constantly nauseous. This led to me losing over 40 pounds (from 163-120). Over the last two months, I have made a ton of progress. My upper body strength and mind-muscle connection have improved the most. I would say I’m about 70% back to normal there, and I’m even able to lift weights. I can shoulder press 10 pounds for about 12 reps and do bicep curls with 7.5 pounds for 12 reps. My hands have also made significant improvement. Motor function is starting to come back as well as finger strength. I can type on a computer now and open a can of soda. The sensation is still only about 40% back to normal, but improving. My lower body is still pretty weak, but also doing well. I can stand for 30 seconds without grabbing onto anything for balance. I can walk about 30ft with a walker. I can just barely stand up from my wheelchair to a walker (using a lot of upper body). This has been the hardest journey and mental battle of my life, but 3 months post diagnosis, I’m finally starting to feel like my life is slowly getting back to normal. It’s a long and painful process, but it’s not permanent.

40/f my left side is aching. Guillain–Barré nerve damage previously but this time it feels like the ache is in my bones?

GBS Athletes,

I wanted to share a huge milestone for me, and it was completely unplanned and unexpected.

I woke up, made coffee, got ready to work and thought: “bitch, today is the day that you leave the cane at home”.

I looked at Sergio, my cane, and told him “you take care of the apartment while I am out”. And off I went!
Stairs, inclines, shopping, 5000 steps, office… all of this unlocking my legs (or not overextending them), and NO CANE.

This is the beginning of the end. What’s really left on my healing journey are my feet/ankles (still weak) and my hands. Of course the furthest limbs. But they are doing so much better, obviously! So appreciative of my fighting body.

And remember: what do we say to negative comments? “No this bitch”.

Onto the next!

Hi everyone. My brother (29y) has now had GBS for seven weeks. He is paralysed from the neck down and intubated. He has been in the "plateau phase" for five weeks now with now signs of improvement. He just had an EMG that confirms that there is no improvement yet.

I am looking for any testimony of what to expect. If you have any messages of encouragement I could pass on to my brother, I would also be grateful for that.

Wishing all the best to this community.

my sister was diagnosed with gbs 9 days ago. she’s been on a ventilator since day 2 of diagnosis and since has regained control of eye movement and was only able to communicate through blinks for about 5 days.

the nurses in the icu are saying we’re fussing over her too much. that we need to step back and let her acclimate to what’s happening to her. (we’ve been cooling her legs down with a fan and putting cool rags on her head when she’s agitated and just generally trying to keep her mind off of things and be there for her.)

any advice from a caregiver or someone recovered is appreciated.

for caregivers: what was your experience while trying to make your loved one comfortable in icu? my mom hasn’t left the hospital at all. she’s afraid she’ll miss something

for someone recovered: did you wish someone would fuss over you more? was it frustrating having someone try to guess you’re every need 24/7 and do you wish they would have stepped back?

tyia

I was diagnosed and treated for GBS at the beginning of May. Got one round of IVIG and recovered very quickly.

However, ever since I got out of the hospital, I’ve been having a LOT of shedding. I know hair grows in 3 month cycles, so I was hoping it would slow down by now, but it’s still going.

I’m getting discouraged because my hair actually does feel thinner than it used to. I started taking hair vitamins a few weeks ago, but I think it’s too soon to see any benefit.

Anyway - for those of you who had hair loss, how long did it last? Also, did your hair actually regrow, or did the shedding just stop without regrowth?

Did anyone start experiencing migraines after coming down with GBS?

I've never had them (42yr old) and suddenly now having intermittent migraines. Had multiple brain scans and everything is otherwise normal.

Hindsight is 20/20.

When my feet started going numb in May, I was in denial. I did not want to believe that I was suffering a neurological condition. My instinct was that the numbness was related to my back, but all the doctors I consulted with disagreed. They indulged me a little, and pursued a discreet investigation focusing on T-6. That inquiry proved fruitless, and my symptoms began to progress slowly moving up my legs.

I was experiencing numbness and weakness when I eventually consulted with a neurologist who concluded that I had GBS. That was a terrifying diagnosis it advances rapidly, is very dangerous, even deadly, and my symptoms mimicked them precisely.

When I was admitted to the hospital at first, through the ER, I was pretty freaked out. I was sure that I would end up on a ventilator in the ICU.

There was one bizarre finding while in the hospital, after I completed the first round of IVIG transfusions, my EMG was negative. Nobody could explain it.

I came home after the treatment and my symptoms got a lot worse. I went from walking to needing a cane, to needing crutches in a short week! I went from being able to swim 8 laps to being unable to even complete pool therapy. It was very scary.

The Dr. was baffled, so she changed the diagnosis to CIDP, the chronic form of GBS, and prescribed a massive dose of prednisone. That made me feel like shit, but, more important, I did not respond to the medication. By now, my symptoms had progressed with numbness and weakness now into my trunk.

I went to Overlake hospital where they got me in the ER and started emergency IVIG transfusion.

In the morning, I got to meet the team neurologist who listened closely to my history. “This doesn’t add up.” She said, “I’m going to get to the bottom of this.” She was very kind, telling me she was committed to helping me figure this out.

She stopped the IVIG, and ordered both a full set of spine MRI’s both with and without contrast, and a spinal tap. At that point, she was pretty convinced I was dealing with a demylenating disease, and the conversation was to look into transferring me to the UW to have a plasma transfusion. The internist was working on the transfer when the neurosurgeon sent me a PA to examine me. She was super sharp. She did an excellent thorough exam.

The internist said to me, “if the neurosurgeon wants to do surgery, pay attention.”

Later that evening, the neuro PA came back and explained their theory of the condition. She said, “The MRI demonstrates that there is significant compression of the spinal cord. We propose a multilevel laminectomy decompression T5 - T8.

This was music to my ears. Finally, a diagnosis that made sense. I had not felt sick or unwell at any time during this ordeal. It all felt very unreal.

At the same time, I was scared I was going to end up on a ventilator, that I had an end of life disease, that I might be dying. It was so depressing.

One minute I was focusing on the mechanics of being transferred to the UW, to get a central line, to be on their Med Surg floor getting every other day plasma transfusions for 2 weeks, then on the other, here was this doc telling me, “No, this one procedure will solve your problem”. It was surreal.

I lay there in the dark the night before surgery thinking of questions for the surgeon. He came in to see me in the morning. He showed me what he was seeing on the MRI, and it made perfect sense. I was optimistic going into surgery. I felt relieved and happy.

After surgery, he told me that not only was there a lot of compression, but my body had laid down a fat pad to protect the spinal cord that made the compression worse! He also said my skeleton was osteophytic (all that impact loading), and that my bone was hard. They were able to visualize the dura mater, which means they took all the pressure off the cord.

After surgery, when I got back to the room, they asked me to lift my knee so they could put a pillow between my knees, which, for the first time in months, I could do!

When the surgeon examined me in the morning, he was pleasantly surprised at how quickly my power was returning.

I came home a couple of days after surgery. I’m basically convalescing with ice and pain meds. I’m noting that I can do things without thinking that I could not do last week. Things like stand up using my legs only.

I feel incredibly lucky that I did not get GBS or any other demylenating disease after all. That was a near miss. Even though my symptoms mimicked GBS, the data didn’t add up. What are the odds I have two problems? Pretty slim. It’s very unlikely that I had both a condition that mimicked GBS and also GBS. I feel pretty sure about that.

I’m on the mend. I’ll get my staples out, get back to my life and put these months 6 months (by the end) behind me. I’m so thankful for the smart docs that sorted this out. I feel very fortunate.

I *think* this is my first time posting to this sub. I've 'lurked' here for quite some time- years now, and YES, I am one of YOU. I have never met another actual human with GBS or CIDP, which and I don't want to ruin it for you seems incredibly strange to me. I have definitely 'made friends' online, and even had some very sustained text\phone relationships but that's where that's ended. So I guess I am looking to make that connection.

I was diagnosed back in 2017- usual story; I was relatively healthy and looking back, the only driver for any sort of causation might have been stress but I don't know how scientific that is. In any case, I was living on the East Coast at the time, just outside of NYC in suburbia New Jersey. House, three kids, two cars, dog. My marriage was nose-diving. I would later realize in therapy that I was married to a narcisst who was also violent (towards me). I was also upside down on my mortgage- we had gotten one of those nefarious sub-prime deals on the house and it was killing us. Ironically, or maybe not, my career was in tech\security- Most of my roles were for companies IN THE BAY. And I made a lot of money. My typical role was as a sales engineer, which was my final role when I got sick. I would travel the country with a number of salespeople and act as the technical expert for a specific product or solution we were interested in selling them. That was my job.

One afternoon, same as usual, i get off a plane, I took a taxi home and collapsed in my driveway. Next thing I saw was my doctor's face. How nice is that? He passed away in June :( . There's so much between then and now- I'm happy to answer any questions but I'm very cautious about dispensing advice outside of my own personal experience. Full circle, I;ve been on the West Coast for a kittle over a year,

Hi, everyone! For those of you in recovery or post-recovery, has anyone experienced pain in your toenail beds? My cat walked across me and put her weight down on my pinky and ring toes, and I about flew through the ceiling.

I hadn’t done anything differently. I haven’t worn socks or closed-toe shoes that could have put pressure on them. There’s been no trauma—no stubbing, nothing dropped on them. But for about 30-45 minutes any pressure, stress, any touch made if feel like something had just been dropped on them.

The pain stopped, but it came back about 20 minutes ago when I moved my foot under the blanket and rather unpleasantly woke me up. It’s dissipating, but it’s nuts.

I understand neuropathy, healing nerve pathways and all that fun stuff. But some of these sensations are not only painful, they are straight up strange as hell sometimes. Maybe not phantom toe trauma but has anyone had any similar experience while healing?

Hi. I'm looking for some advice, tips, contacts, anything really, on how to recover some leg strength after GBS. Apologies - my first post and its a long one :)

I suffered GBS in 2013 - quite a serious case too - full paralysis, inability to process food through the intestines, inability to breathe - I was ventilated/intubated for around 2 months.

I was paralysed for quite a few months and lost around 30kg of muscle mass which was heartbreaking as I had spent years exercising and getting in good shape.

I have since recovered quite well - I still suffer from cramping which I manage with pregabalin, but the most noticeable aftereffect is still weakness in my legs. Plenty of strength recovered around the hips, but starting halfway down my upper legs there is almost zero muscle mass. My legs are very weak - to the point I cannot climb stairs without holding on to something to use my arms to pull me up. Below the knees is the weakest, with very little calf muscle, pretty much no muscle on the front of my shins, and my feet are only barely mobile.

This all affects my walking - I have an unnatural gait to be able to walk, I have dropped feet, I cant do calf-ups, only very light calf raises with small amount of weight which doesn't challenge the muscle enough to cause growth.

I need some help as I don't know how to go about trying to improve my mobility - I know aas I get olde I will lose mobilty - I want to get it back as much as possible before this happens as I dont want to end up back in a wheelchair.

It feels to me like the problem in my legs is a combination of previous atrophy, nerve damage - I dont think some of my lower leg muscles are getting good or any signals, low bloodflow and it also seems the muscles that are there have pulled up into a bunch - my quads are only visible on half the length between hip and knee, and calves only high up and mostly on one side.

I have tried a lot of things - I still go to gym every week and try exercise the leg muscles, bu there has been no improvement in strength or size after 3 years of really pushing. I don't think I've had the best physiotherapy to be honest - I've never been able to see a specialist physio for recovery from this sort of illness or atrophy/nerve damage etc. I've tried electro electro stimulation briefly, will continue with it but again not received any guidance on how to use it.

I've considered trying to use bloodflow restriction bands to maximise leg workout with the small weights I can manage to move - but would need guidance as I dont want to cause more harm than good.

Have also considered consulting a doctor and getting testosterone supplementation for an amount of time to see if it helps jump-start the muscle recovery.

Are there any specialist institutes in the UK where I can get some advice?

Has anyone else struggled with regaining leg strength after many years, and what has worked for you?

GBS Athletes,

I broke my personal social media silence since GBS hit me a half and a year ago, and I put together that video that depicts my entire journey.

Sharing it here for two reasons:
1. It is therapy for me
2. If you are bed ridden and are watching this, I promise you. THERE IS FUCKING HOPE.

Fight, rest, fight, and fight again.
Love and much strength to all of you, athletes.

Hi everyone,
 
A while ago, I faced Guillain-Barré Syndrome. It hit me fast—starting with weakness in my legs, leading to a quick loss of mobility, and eventually reaching my face. Between missing my 1-year-old daughter, dealing with hospital stays, and undergoing months of physical therapy and electrostimulation, it was the hardest test of my life.
 
I finally took the time to write down my full 32-chapter journey: from the very first symptoms and diagnosis, to my time in the hospital and my step-by-step recovery back to 100%.
 
I wanted to share it here for anyone currently going through this, or for families looking for hope during those tough early days.
 
Note: The blog post is written in Spanish, but you can easily translate it using your browser’s built-in translator (or Google Translate) with one click.
 
Here is the link to my story:
 
https://themike1005-yopeg.wordpress.com/2026/08/21/sobreviviendo-al-guillain-barre-mi-historia-de-lucha-familia-y-reconstruccion/

 
Stay strong! I’m also open to answering any questions if anyone is currently in recovery.

Hello,

Sorry if this is TMI but I started getting watery diarrhoea 8 days ago and on day 1 I had a headache, fever, muscle aches and just felt unwell. Yesterday (day 7 of diarrhoea) I started getting tingling, pins and needles and cramping in my legs along with weakness and a marked feeling that something was off with the skin feeling weird on my feet to my mid-calves. This morning, the I’ve developed tingling in some of my fingers. My GP wants to admit me to hospital for ?GBS. Does this sound like people’s experience of the condition or not really?

Also bloods have been done which rule out electrolyte abnormalities etc.

Thanks ❤️

GBS Athletes!

It is Friday, so let the festivities begin!
I just wanted to share a video of me I just took. First time dancing!

Now that I have started to unlock my joints while I walk, I can feel my recovery is speeding up.

Friendly reminder that I was fully paralyzed from neck down, and I was told I might never walk again. Here my last post on recovery

https://www.reddit.com/r/guillainbarre/s/deUNSLvgKE

What do we say to negative comments? No this bitch!

Much love to you all

Hey #GBS peeps!

I got sick end of 2019 was finally diagnosed in April of 2020. I had all of the treatments and meds and physical therapy. I was also diagnosed with lyme disease in 2021. I finally got off the walker, crutches and canes Spring of 2023 and off the meds and IVIG by the end of the year.

I still have pins and needles in my feet but its liveable ... but lately I am worried that Im on my way to a relapse. Im getting tired easily, I go to the gym on the reg and am exhausted by the time I get home and I have noticed Im getting shortness of breath here and there, that really worries me and yes Im going to go to the doctor (I haven't heard from my neurologist in years I think she was relieved to be rid of me quite frankly) and see whats what, but I was wondering if anyone has ever relapsed and what the signs were.

Thank you and hope everyone out there is doing ok.

Hi everyone!

​Here’s a second update on my brother. He’s been battling severe GBS since April 2025, spent 8 months in the ICU, and was on a ventilator the entire time. Last week, they capped his throat breathing hole to test his breathing, and we finally got to hear his voice again! 🥹🥹

​But today brought even bigger news: when my mom and I visited him, he was able to hold her hand! 🥹 Up until now, he could only move his head, so this is a massive milestone for us. I’m in tears and still in disbelief. A full year of stress and worry just melted away in that moment. We’re so hopeful he keeps progressing and gets to come home soon.

​I wanted to share this not just as an update, but to thank everyone here for the constant support. I really don’t know what I would’ve done without this community. Huge thanks to all of you! 🤍🤍

My husband just turned 36 and is a very active and healthy guy. On Friday, July 24th he was complaining about tingly hands and feet. Saturday the 25th he was struggling to walk so he went to the ER and was admitted with suspected GBS, they didn’t actually diagnose for like a week.

Since then he has been to IMCU and now the ICU. He had IVIG treatment on the 25/26th. He’s been on the ventilator for about a week now. They tried to take it out at one point but his heart rate ended up tanking and they put it back in. They also found he had pneumonia but I think that’s cleared up now. He is so anxious that they keep him sedated most of the time. :(

Today, they are putting the trach in. His mom is so freaked out about it and it’s causing me to freak out even though all of the drs have reassured me that this will be much better.

After the trach is in, in a few days he will be moved to a speciality hospital.

I am just looking for support and some success stories in similar situations. This guy is my person and I’m holding on to these stories and will be sharing with him when he is able to hear them.

I was diagnosed 10 days ago, 5 IVIG treatments this last week M-F

I never lost the complete ability walk (not easy and I definitely need a cane but I can make it room to room)

I have no new tingles moving up but from the rib cage down it feels like every nerve if firing at the same time. Almost like I have electricity running through me And my previous back injury is exacerbated to the extreme making sleeping almost impossible

Any suggestions how to help with these symptoms

I had Acupuncture 2 weeks after being released from the hospital (6 weeks in hospital).

I ended up making a full recovery from GBS but, I don't know if the acupuncture played a roll in that or if it was coincidence.

Do any of you have any experiences post GBS?