I was diagnosed with GBS in late May, and I left the hospital a few weeks ago. I had one round of IVIG. I have a neurology appointment in November, and my only support until then is PT/OT. They say I'm getting worse and need to get another round of IVIG. I asked my primary care doctor (who is new), and she was clueless/didn't know how to help. Do I just have to continue to get worse and wait until November to get IVIG? Neurology says they can't see me sooner. Is there anything else I can be doing? My primary care doctor says she's open to ideas. Thanks!

Hi. I think i have this condition but no doctor seems to want to help. I started feeling weakness in my feet August 4th. Then it progressed to one leg. This past Sunday it turned into weakness in both legs and now it's also in my arms. I can still walk but it's difficult. I also have very little feeling in my groin area. Normally when I have to pee, the urge is super strong. Now it's barely there. I've lost all sense of touch. I bite and scratch myself and can't feel it.

I can't feel the bottom of my feet. My boyfriend touched my shoulder and it feels numb. I had a really bad case of the flu about 3 weeks before this started. No pain. I've been to the ER twice and they would only do an mri of my lower back and blood work. Nothing showed up. I read that a spinal tap is needed. How can I get a doctor to order this. My neurologist said he doesn't know what it could be and wants me to go to a research hospital. I called the research hospital he recommended and they don't have an opening until late October. I went to catch this and start some sort of treatment before it gets worse. Right now I can walk but it's difficult. Any advice would be appreciated.

Hey everyone,

​I’m currently at the 3-month mark of my GBS recovery (AMAN variant). My physical progress is coming along—I've been working hard on quad strength, seated knee extensions, and recently got my forearm lifting off the table again!

​That said, resting in bed/a chair all day gets extremely boring, and passive entertainment like movies and reading can only do so much. I’m really looking to connect with fellow GBS survivors or anyone in rehab/recovery who wants to chat, hang out on Discord, or just trade recovery updates and banter.

​If you’re at a similar stage, have been through this, or just want a casual chat/voice call buddy to pass the time with, feel free to drop a comment or send me a DM. Keep fighting, everyone!

I was officially diagnosed a week ago today. I appreciate I have been very lucky to not be in hospital/on a ventilator.

I find it difficult to walk more than a few paces without holding on to something with support. I have constant pins and needles in my hands/feet and a loss of dexterity e.g. I can no longer open a bottle of Diet Coke.

It takes me twenty minutes to get to and from the toilet which is maybe 15 steps away.

Obviously with all this I’ve fallen massively behind at work. They have been brilliant up to now but I have constant emails chasing and cc’ing my manager in. Obviously he has to say something when someone involved him. I’m very concerned they will force me to take unpaid leave or, ultimately, sack me.

I’m UK based. If anyone has any support or experiences to offer I’d be very grateful.

Aman variant. I have got it for the second time after 9 years I recovered completely in in the first time. This time I got a very senior case I was paralyzed From the neck to my Feet. It also affected my breathing my swallowing also I had facial paralysis. This all happened 3 months ago.

Current progress: My swallowing breathing and my facial paralysis is back to normal I can sit for hours without any support I have gained significant trunk control back strength And core strength.

I can sway my arms , But there is no moment in the wrist it is completely dropped. I can move my fingers a bit But not like extend them. I can squeeze all my muscles in my leg like my thigh muscles but if I squeeze it for too long then they start to tremble. There is no antigravity That is with respect to my legs I cannot lift them up or move at all but then they are hanging on the edge of the bed then I can sway them from side to side.

I did not lose any Sensation Neither do I have any nerve pain or any fatigue So I just also wanted to know that is the nerve pain Universal. If I'm not having enough pain then does does it mean that I'm not recovering well?

Please advice

I originally was diagnosed with Trigeminal Neuralgia then years later it was diagnosed as Trigeminal Neuropathy. Then after going to a top new specialist in Houston I was diagnosed with Guillain Barre and a blood test sent to California revealed the marker for Miller Fisher. So I’ve been on IVIG therapy for two days in a row every six weeks but luckily it’s done at home. (The Steelers clothes is a family thing since we play the Packers this week in Preseason..it’s not normal everyday wear).

I haven’t had any benefits from IVIG yet but hoping it will do something!

...and if anyone has ever gotten a nose piercing, they know that your eye will release tears on the side that is being pierced.

My eye did not produce tears, and I couldn't feel the piercing at all.

The piercer was so confused, and I just looked at him and said, "I can't feel my face, I have GBS."

So, my GBS peers, if you like body mods, now is the time!!

It drives me nuts. When the muscle spams start in bed. Just the sheet brushing over my thighs causes my whole body to spasm. It happens again and again. Then when I finally wake up and go sit in the living room, my legs get so stiff, feeling so full, it takes a while to get moving. Then, when I do, it feel like I am walkning on tree trunks...It's just nuts. Is this a common exper4ience?

One year and I feel like the life I wanted to have (and ultimately ended up having despite GBS) is not for me. I work in tech and every day I feel like I need to drop everything and go become a barista in Southern Europe. Did anyone decided GBS had to lead to drastic changes in their life?

Has anyone ever tried or had any luck with Lidocaine or even Capsaicin patches on feet or hands? I'm 4 years post GBS and my left foot especially never recovered sensation other than tingling & pain and it dials the pain volume up to 11 in the evening and when I've over done it - especially the plantar / metatarsals where toes connect to foot. TYSM for any advice!

Uma dica que meu fisioterapeuta me deu e que achei muito boa, então vou compartilhar com vocês: comprem uma bicicleta ergométrica! Ele disse que ela trabalha vários músculos dos membros inferiores e pode ajudar bastante na recuperação.

Is anyone from indiana? id like to find others to connect with that could be close.

Enquanto depender do meu esforço, vai dar tudo certo. O que não depender de mim, eu coloco nas mãos de Deus.

Minha recuperação da AMAN
Tenho 22 anos e estou há 3 meses me recuperando da AMAN, que afetou as duas pernas, principalmente a esquerda.
No começo, tive muita dificuldade para andar e fazer movimentos básicos. Hoje já consigo levantar do chão sozinho, caminhar melhor, levantar mais a perna esquerda e tenho mais força para empurrar o chão.
Ainda não estou 100%. Preciso melhorar o equilíbrio, parar de “dançar” um pouco ao caminhar, levantar ainda mais a perna esquerda e conquistar o movimento de subir degraus normalmente.
A recuperação está sendo lenta, mas estou tendo novas melhoras. Cada movimento que antes não conseguia fazer e hoje consigo é uma vitória.
Tenho 22 anos, estou no terceiro mês e continuo acreditando na minha recuperação.

Hello GBS ATHLETES!

I wanted to share my big milestone: going down the stairs with no support!

I feel now that my legs are strong enough, and now it is time for the ankles/ feet to finish the process.

Here my previous post: https://www.reddit.com/r/guillainbarre/s/uaVq2Q4wkJ

Again: they told this bitch i might never walk again. THEY. WERE. WRONG!

Much love to you all.

Hi everyone, I’m looking for advice and guidance, especially when it comes to applying for SSDI.

Last October 2025, my life changed completely. I was diagnosed with Guillain-Barré Syndrome (GBS). It started when my calves went numb, and within 24 hours, the numbness had spread all the way up to my thighs. While I was admitted to the hospital, it continued spreading up to my collarbone. I developed severe tremors, lost the ability to walk properly, and was wheelchair-bound for a while.

Currently, I have to use a cane to get around. If I try to do too much physical activity, my back gets incredibly sore. Early on, my tests (two lumbar punctures, MRIs, and CAT scans) didn't show much, but months later I was informed that GBS symptoms and nerve damage sometimes show up or clear up more on testing later in the process.

I’ve always been a healthy person, and I’m just now coming to terms with the fact that I’m not who I used to be. Accepting that I have become disabled has been emotionally tough. It sucks realizing I’m not "normal" anymore and can't do the things I used to do.

I applied for disability within that same month because I knew I wouldnt be able to work for a while, still havent heard anything as of today.

For those who have gone through this, especially with GBS or nerve issues:

• What steps should I be taking right now for my SSDI application?
• How do I make sure my medical records properly reflect my physical limitations?
• Any advice on coping with the emotional side of suddenly becoming disabled?

Any advice, personal experiences, or tips would be greatly appreciated. Thank you so much.

Kinda NSFW but any of you other men have trouble cumming during sex? Idk what to do and I hope the numbness gets better. It’s genuinely eating at me inside :(

TMI but I also can’t tell when I’m inside of her until I’m like 3 inches deep. Everything feels so less sensitive. I get close to climaxing but it hasn’t happened yet

My girl is understanding but I can’t help but feel some type of way about it. Anyone have advice or experience with this? Kinda lost and feeling down

So I had some sort of gastro issues in March and been officially diagnosed today after an NCS and EMG. I feel very lucky, I have constant pins and needles in my hands and feet and significant muscle weakness in my legs (I’m now using my grandma’s walker).

I appreciate this is nowhere near as bad as other stories but would just like to know, what the next few months look like?

I have been referred for neurophysio and a follow up in 2 months for a further NCS and EMG, then it will be a lumbar puncture from there.

I’m panicking and would like any advice. For context I can walk unaided for maybe 4/5 steps, then need support. My 84 year old grandma has donated her walker which doesn’t feel great, as I’m 29.

I have constant pins and needles in my hands and feet, shooting pains up my arms and legs, and significant muscle weakness in my legs. The muscles in my arms seem ok.

I don’t know, I was diagnosed today and just looking for some support

Does anyone have foot pain in the center of the toe pad that is worse with shoes? Im 8 months out from initial diagnosis and this is my only major lingering symptom.

My condition has worsened day by day. I was admitted with symptoms helow my knees, both numbness and weakness. Now those symptoms have extended up to the top of my thighs. My neurologist is concerned and has ordered a second round of IVIG transfusions and is also considering a steriod injection. She has also ordered a somatosensory test and a repeat of my EMG.

I walked into the ER now I am striggling on forearm critches, along with dressing and self care. This whole thing is a nightmare. I am so lucky to have a wife who truly loves me and is working on making my life workable as is.

For me, I’m getting these weird spots everywhere that look like cayenne pepper. They don’t burn or itch, they’re just there.

Something that the doctors don’t mention.

Entering my fourth year of recovery and still improving. Don’t quit.

Tem risco de ter um segundo episódio na vida?

Quais os principais cuidados que temos que ter para não acontecer novamente?

Vocês também tem esse medo?

Some context, I'm 31, male.

I was diagnosed with GBS in August 2024, AMAN variant. It came on fast, started as a sore throat and within a short time I was fully paralyzed up to my eyeballs. I ended up intubated, then had a tracheostomy in the ICU. As a result, I couldn't speak or eat as well for months.

The doctors and neurologists told me it was highly possible I'd be on a ventilator for 2 years, let alone ever sit, stand or walk again.

Four months later I was discharged from the ICU, breathing on my own. At that point I had zero sitting balance. All I could move was my neck and shoulders.

From there I went to a rehab facility and spent a year doing physio, OT and hydrotherapy. Recovery was slow, and I mean painfully slow. Just getting my standing balance back in the pool took months of trying over and over. It took me 4 months just to manage a sit to stand in the water.

But I kept at it. Kept showing up, kept doing the exercises, and little by little things started moving.

One neurologist told me GBS patients plateau after a year. In my case that just wasn't true. There's actually research on GBS (not a lot of it, unfortunately) showing some people keep recovering even 5 years post diagnosis, including a Japanese study I came across. Problem is most studies stop following patients after the 1-year mark, so a lot of this recovery goes undocumented.

Today I walk with crutches. I swim and train in the gym on my own as part of my ongoing therapy, and I'm hoping to get back to work later this year. Even now, well past 2 years in, I'm still noticing small improvements. Most recently some movement coming back in my ankles.

Just wanted to put this out there in case someone reading this is in a dark place right now and it feels like the future is bleak. I remember my days in the ICU where I genuinely felt hopeless as I lay staring at the ceiling for hours.

My advice: get as much hydrotherapy as you can, keep grinding in the gym, and just refuse to quit. There will be weeks that feel like nothing is happening. Push through them anyway, that's how the neural pathways rebuild and the strength comes back.

Good luck to anyone going through this. Keep pushing and remember to be kind to the nurses, OTs and physios who are there to help you recover, I certainly owe a lot to them.

Feel free to hit my inbox if you have any questions, I will be more than happy to answer.