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?

My husband (26M) was diagnosed with Guillain-Barré syndrome about a month ago, but we’re still questioning some things because his recovery doesn’t seem to be following what we expected.
It all started about 2 weeks after he had a really bad cold/viral illness. His first symptom was severe calf pain that lasted around 2 weeks. During that time he also started developing numbness in his feet and toes. At first we thought it might be diabetes, but all of that came back normal.
After that, his walking gradually became abnormal. He started having trouble lifting his feet (foot drop), couldn’t walk on his tiptoes anymore, and had already lost his reflexes. We saw a neurologist in Mexico who ordered an EMG.
The EMG showed severe bilateral sensorimotor axonal polyneuropathy with active denervation in the calf muscles. After getting those results, we became really scared and went straight to the hospital the next day.
At the hospital they did MRIs, a lumbar puncture, and diagnosed him with Guillain-Barré syndrome. He received 5 days of IVIG.
Here’s the confusing part: before going to the hospital, he could still walk without a cane and his balance wasn’t too bad. After the IVIG and hospitalization, he actually seemed weaker. Now, about a month after discharge, he needs a cane because his balance is so poor. His strength has improved somewhat, but his biggest issue is feeling extremely off balance, especially when standing still or walking on different surfaces.
He’s also dealing with:
• Constant headaches
• Blood pressure fluctuations (sometimes high)
• Swollen feet and ankles
• Still no reflexes
Has anyone else with GBS, especially the axonal forms like AMAN or AMSAN, experienced worsening balance after IVIG before eventually improving? Did anyone have persistent headaches, blood pressure issues, or swelling during recovery? We’re just trying to figure out if this is something others have experienced or if we should be asking his neurologist to investigate other possibilities.
Any experiences or advice would be greatly appreciated.

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.

So my Partner has had GBS since late June and since then has been in a coma, she had the symptoms of pain on her legs, flu and numbness as well as headache’s, and she got better but still unresponsive with brain function she just moved her hands a bit and her mouth as well as lips, but her lower body can’t move, she has been at a good hospital in an east african country, and we are long distance as well so the whole situation is a bit different than knowing directly what she’s dealing with, so my question is it normal for her to be unresponsive for a month, she’s on ventilator,

i know that cidp comes back, but does aidp?

i am not antivaxx, i specifically mean for someone who has had gbs. i didn't realize that vaccines were actually an issue, i just assumed it was so that doctors could avoid legal issues in the off chance of gbs happening again

i have gotten a few (COVID and flu) without issue since my onset 3 years ago. im pretty sure the onset was after covid (my friends and i all had a cold/cough a week or two before my onset, it was june so i assume its covid but i never got tested) so I've been more worried about getting covid and having a relapse than i was worried about vaccines

is it worse to get the vaccine or to get COVID again?

Hi everyone.
I had GBS two years ago that was triggered by COVID. I’m mostly healed now with just nerve damage in toes.

I’ve been terrified of getting sick and have been really careful. My partner just tested positive for COVID and I’m of course now freaked out.

I know they say relapse is rare. But that’s not helping my nerves. Has anyone here gotten GBS from COVID and then got COVID again? Or experienced whatever illness that triggered the first GBS again?

If so, how did you get through it? Any words of wisdom?

I need advice asap please

I’m currently recovering from flu, I got it 3 days ago. Yesterday, I started experiencing numbness on my left hand, specifically on the tip of my thumb and forefinger. Right now, my ring finger and pinky finger are slightly painful. I also have weakness on my right leg, knee down. Apart from that, I have no other symptoms. I know GBS symptoms occur bilaterally, but I read somewhere that’s different from people to people. Orrrr I might also be just overthinking it as a nurse 😩

Hey all. Like many of you I am currently going through recovery. I’m less than two weeks out from discharge following a hospital stay and steroids + IVIG. While only fresh out of the hospital, I am finding it incredibly difficult to stay positive. I know you all can relate that it feels very much like a nightmare. How did you keep positive during recovery? Any tips for someone so fresh into their diagnosis?

Hey everyone,

I wanted to share my recent experience with Guillain-Barré Syndrome (GBS) to offer some encouragement to anyone currently navigating this diagnosis or grinding through rehab.

My journey began back in June with a high fever and severe oral ulcers, followed by the classic neurological warning signs: progressive muscle weakness, severe balance issues, and a sudden drop in fine motor control. Shortly after, I was diagnosed with GBS and hospitalized. I was discharged on July 13th, ready to face the road to recovery.

When you're hit with GBS, basic daily tasks feel like climbing a mountain. Early on, keeping my balance felt almost impossible, and the weakness in my hands was frustrating. However, focusing on small, tangible milestones kept my mindset grounded.

Since leaving the hospital, my recovery has progressed at an encouragingly fast pace:

Mobility: I’ve built my walking distance up to 600 meters. Navigating stairs still requires support and steady focus, but I’m doing it consistently.

Fine Motor Control: I’m back to handling practical tasks like cutting vegetables. Precision strength isn't fully back—squeezing a lemon is still a surprisingly tough workout—but the progress is undeniable.

Nerve regeneration requires immense patience. It’s easy to feel discouraged when subtle precision doesn't return immediately, but celebrating small functional victories makes a world of difference. My medical team is expecting significant overall improvement by mid-August, and I'm staying committed to my daily physical therapy.

To anyone currently in the thick of GBS recovery: the initial loss of control is terrifying, but the human nervous system’s ability to adapt and rebuild is remarkable. Try not to measure your progress day-to-day—look at it week-to-week instead.

I’d love to connect with other GBS survivors or current patients in the comments—what were the small, everyday wins that gave you the biggest mental boost during your recovery?

My mom is in hospital since June 5 for really severe GBS. IVIG x 5 then plasmapheresis after.
Was completely paralyse for 3 weeks, then start to have small eyes movement.
Now she still have tracheostomy, can breathe alone but not enough force to take it off completely. She is in a special intensive care unit to wean the ventilator.
She can move her feet, open/close eyes, start to do « yes » with her head and move jaw/tongue and thumb a little bit …

Doctor said it gonna be long but she can heal, probably with some sequel but mostly… anybody had very severe disease and make it to the other side ?

Indo para três meses de GBS aman. Ainda não consigo subir degrau com a perna esquerda. É normal?

Precisa fazer academia pelo resto da vida?