Hey everyone. I’m a month and a half out from diagnosis and a “severe” case of GBS according to doctors. I’m now on a walker and home. What have you all seen from a diet and exercise regimen that helps? I’ve been doing and hour on the bike and lifting upper body daily and upping steps on the walker as well as some yoga practice in bed or couch. However I’m noticing heavy nerve pain but with that more strength. Is this the normal? Should I slow down? I’m all ears. For diet, I’m very strict with eggs, avocado, banana in the morning, a protein smoothie at lunch, avocado spinach and blueberries, with 2 servings of quinoa, vegetables and tofu for the rest of the day with loads of H20. Also taking Lion’s Maine and Omega 3. Let me know what you recommend? Praying for you all here <3

Hi everyone. I'm 4 months out from diagnosis and doing pretty decent. Everything seems to keep slowly coming back online. I have ongoing nerve pain, numbness and tingling in my feet.

Now that I'm mobile I'm going back into the office. This means I'm wearing socks and shoes again. I've been pretty much barefoot for the past 3 months in my apt and in the hospital they had those big baggy socks.

When I get home from work it seems like my feet are slightly red and puffy. Has anyone experienced this? Is it something GBS is doing or is it because my feet aren't used to being contained? My heartrate is still higher than it was pre GBS at 95-100 but BP is in the normal range. Could it maybe be cardiovascular?

I plan to ask my doc but curious what others here have experienced. I find doctors tend to be a bit uncertain when it comes to GBS and the specialist takes months to get an appt.

I'm around 1.5 years from onset of severe Miller-Fisher. Fully paralyzed for a week. Now, living pretty independent. Walking without aids (still struggling a lot though)

My PT recommended binding devices to force more feeling into my limbs to help nerves. I wear a cheap Walmart back brace and super tight diabetic socks now when im out and about doing PT, OT stuff.

It has helped me a lot especially in my torso where the paralysis hit me the hardest was my neck and torso. I frequently just don't know where my body parts are exactly and this has made a difference to me.

Ask your doctor I guess but this seems pretty harmless to try out. Please correct me if I am wrong and if I should not recommend this to this community!

Diabetic socks were 20 a pair and the back thing was around 30.

My mom (50F) had a sudden relapse. She suddenly could not move her whole body and had a breakout of hives the night before. We are taking her to the A&E now.

She had 5 IVIGs and was on the vent and a feeding tube when she was in the hospital for her initial symptoms. She was completely immobile.

She was discharged and improved to the point where she does not need her walking sticks anymore.

Why is this happening now 😭😢

hi friends

today, at 2 years since extremely rapid onset and total paralysis+vent, I walked with nothing else than AFOs for the first time ever!

just sharing to give hope to others that might have heard (as I did) that there's little progress after first year <3

Hi, I'm glad for this thread and I wish who reads this big healing.

I had what I assume was food poisoning a week ago today. Very bad attack of diarrhea , etc. lasted 5 days. On day 5 (this past Friday) went to doc for stool testing. I live on a farm and was concerned about parasites. Still awaiting results.

Yesterday morning (Sunday) woke to unilateral pain on right side that was odd...felt neurological with tingling and electrical feelings, but also very painful in soft tissue. Right foot, right bicep, then right hip and buttocks. Spread like fibromyalgia used to feel, but soft tissue stuff felt very different. By the time we got to hospital a few hours later, was having numbness and tingling in both feet and shins. I can't bear weight on right foot or flex right arm. They did LP last night about 9 pm and I'm quite uncomfortable. It feels like I have back pain that started before the LP, plus the LP pain, and strange nervy pain with heaviness in both legs. Random pains in sacrum down through butt and legs.

Neuro does not think it's GBS because the pain started on one side only, but that seems to be the primary rule out, though staff was doing PPE because I was meningitis risk. Spinal fluid came out clear.

My arms feel okay so far. Little numbness in thumbs, like someone dipped them in wax if that makes sense.

I have a history of autoimmune disease. 57F, fit and clean eater. If I eat clean and stay fit, other autoimmune stuff stays under control.

Just wanted to reach out. Has anyone ever heard of GBS starting unilaterally, on one side? I had reduced reflexes on that one side. This day 6.5 after food poisoning started. Thank you.

Update 10/28/2024 discharge me w no diagnosis but I have a discharge sheet for GBS. Maybe it's in case further symptoms develop. They said it could take a week after food poisoning ends for symptoms to still develop.

My child (age 10) developed symptoms immediately after a virus and received IGIv on day 9 of said virus. We brought him to the children’s hospital relatively “early” in his GBS bc he was unable to turn over in bed or stand up without help.

He had his second round of IVIg last night (we are now day 11) and already able to move in bed, stand up, and even walk short distances (although unsafely and requiring stand-by support).

What does recovery timeline possibly look like for someone of this age and someone who is responding to IGIv??

I want him to get back to normal kid life asap.

Thank you so much

Is body pain a regular feeling after IVIG? I'm going to ask my primary care provider. Curious as to others with body pain. And how long after it goes away, I seen months/years.

I am 19 years old and had GBS when I was 9 years old. I still have lingering pains, and my muscles seem to be always tight especially my hamstrings. I am taking duloxetine to help with the residual nerve pain but I feel like I will never not be in pain. I was just wondering if anybody had any advice. I have been really struggling.

Hello Everyone! I was wondering if those of you with GBS may be able to help me out here.

About a year ago I started having extreme symptoms very similar to GBS. I've been tested for many auto-immune diseases but have all returned negative except for my ANA tests and such, which my doctor fully believes I have an autoimmune disorder, just unsure which one.

After reading about GBS, I've come to wonder if I should bring it up to my doctor but I am not entirely sure if my symptoms completely align. I experience numbness and tingling sensations in my arms, hands, legs, and feet. My heart rate is abnormally high as well. The thing is, my symptoms occur and then go away... the numbness/tingling lasts for a span of 30 minutes, an hour, sometimes a little longer. There have been times when I have just felt extreme pain and numbness for a few days but then I am right back to normal. I at least experience this sort of "flare-up" more than once a day. I do always feel weak, the same feeling after intense workout, writing is difficult because my hands can barely grasp a pencil at times, walking feels like hell, and most days I just feel so stiff and in pain. There is always this lingering tingle too. Is this something that people with GBS experience? What I read about GBS seems to me that the symptoms occur and then don't go away until treated. Please properly inform me. I just want to know what is wrong with me... I've been dealing with this for a whole year and live every day with this pain and discomfort, as well as the fear that I may never be able to move again...

Hi all,

I am travelling at the moment in Africa and I have had six food poisonings during 4 weeks.

At the time of my writing I am suffering from food poisoning. I got this weird symptom, numb toe, and then it spread to the toe next to it. This numbness lasted like 3 hours maybe. I googled this symptom related to food poisonings and found this sickness.

I read about this sickness and now I am feeling tinkling in my legs and hands, but I'm not sure if that is psychological (I create them in my mind) or real symptoms.

What do you think? I'm obviously super scared and not very trusting of the hospitals in this country. It's middle of the night rn, but I'm wondering if I should leave to the hospital or just wait and see how I feel in the morning.

Edit: I also have slight pain on my other calf.

Edit edit: now it is morning, still feeling numbness and tinkling and slight pain is over the knee already, but just on my other leg. Other one is fine. I'm hoping it is just a symptom of food poisoning itself. But I'm gonna see a doctor today and figure out if I need tests at the hospital.

Any advice or information of how your symptoms began and spread are appreciated!

Hi all, I'm currently trying to improve upon existing AFO designs for a school project and would love to hear all your complaints, wishes, and general remarks on wearing them. Any feedback or input is greatly appreciated!

I lost way too much weight very quickly, it was very unpleasant. I think like 30 or 40 lbs in a month.

A mix of atrophy and not being able to eat/chew for long enough to get real meals in me I guess.

I contracted GBS in February and couldn't move. I was lucky enough to get back to walking by May, but the one place where where things are coming back slowly is my face. My speech therapist keeps saying that the activation and movement around my cheeks and lips is looking better and my bilabial sounds are improving, but I still can't stand having my picture taken and any photos of me in the past few months I refuse to look at. I just want my smile back. I'm 24 M if that matters.

after two months of no basically no walking and a 30 pound weight loss over 4 months, my feet have shrunk an entire size. my old shoes feel like walking in clown shoes. pretty strange, anyone else experience this?

My neurologist recommended me to start taking weekly doses of Vyvgart and mentioned to me that it’s a newly used medication for GBS. It was used for other things in the past. Anyone have any experience taking this or can give me any insight?

I'm 27 years old, 7 years ago I had bariatric surgery, two months later I had the symptoms. Just 6 months later they diagnosed me. I underwent immunoglobulin treatment and then plasmapheresis. I was intubated and had a tracheostomy. I had 3 cardiorespiratory arrests. All this for a year. They said the likely cause was a lack of vitamin b12. Nowadays I walk with the help of a crutch, I only lack sensitivity in my feet. I don't feel neuropathic pain. They say it's because I had the disease at a very young age.

Hello everyone, a quick update from the last post: Here is a rough draft of my thesis discussing hypothetical prevention for GSB, starting in Peds. I've attached the link for you to read if interested! I would appreciate any feedback and personal stories if interested in contributing!

Link: https://docs.google.com/document/d/1lOrvTTwK_7NHmSw0Z8DEzqtNNw83aeUF1SxA-wJZ7cM/edit?usp=sharing

Hello all! I (17f) was diagnosed with Guillan Barre of the Miller Fisher variety about a year ago. I have since made a mostly full recovery, still some weakness, but my facial muscles still have little to no movement. I had been doing the exercises my physical therapists gave me, and have just started trying a new routine. I was simply wondering if anyone had any advice? My problem areas are around my eyebrows, and my lips, area around my mouth.

It’s kinda hard for me to deal with this along with trying to accept that I may just be kinda stuck like this, so pretty much any advice helps.

I’m feeling very frustrated and would love to know if anyone else has had this issue. Very long story short, I have had two episodes of onset ascending paralysis in the past 6 months. Both times I was diagnosed with GBS. Before my last hospitalization, I was set up with a neurologist who strongly believes I have CIDP, but has yet to find the “sufficient evidence to support this diagnosis to insurance”. I have had countless tests and there has been things to support it just not enough for ongoing treatment I guess? Has anyone else had this issue? I’m terrified that it’s going to happen again, especially since my last hospitalization was very traumatic.

How soon after a vaccine would you have symptoms of GBS? I had a rabies vaccine for travel and the day after my feet felt tingly. That subside but my shin feels a bit numb but only intermittently. It’s only been 2 days since the vaccine. Maybe it’s in my head. Thanks for any insight. Also can GBS be overlooked or would you know you had it?

hi, i was diagnosed with GBS about a week ago and have been doing well on my road to recovery. however, today i have developed intense pain. it’s a constant and severe ache that’s keeping me from sleeping. is there anything i can do? i’m almost scared to ask how long this will last because i can’t do this for much longer and it’s been a day. the nurses at the rehab center i’m at cant give me anything other than tylenol and i already took my dose for this 6 hours.

Hi all,

14 days after my flu and Covid vaccine I developed a heavy leg feeling, pins and needles sensations all over my body. I let it go for a few days and on my trip to Seattle ended up going in to be seen. They did a lumbar puncture which was negative and I’m waiting on a MRI of brain in spine. I also have MS so not sure if this is a flare or if I have GBS. Feeling concerned.

Is this normal what's going on with me my arms legs feet Shins and wrists

So a friend of mine has been complaining about her eyes after being treated from the syndrome years ago. She says her eyes hurt after driving especially on the highway for more than 2 hours, and her vision starts to faint or get blurry. Doctors suggested it might be another unrelated condition to the syndrome but they ruled that out just a couple of days ago, so we are left wondering if that could be someone that was carried on by the syndrome after treatment. If anybody has ever had problems with their eyesight after being treated, can you please share your experiences?

Hi everyone. My mom has been in the hospital since the end of July and is finally coming home soon! I live out of state and won’t be able to visit for a while. I was wondering, for those who have been through this before, are there any items that helped you as you transitioned to home? I’m hoping I can send helpful things but I haven’t been able to come up with much yet. I think this is such a unique experience it’s hard to imagine what things could be useful. If you have any ideas or experiences to share, I would love to hear about it! ♥️

Anyone know anyone who was put on a ventilator? Looking for some good news.

My parent was recently diagnosed with GBS. She wasn’t experiencing any pain and hasn’t been sick or received a vaccine but loss of motor skills in hand and tingling and weakness of the legs and diminished reflexes. I initially thought this was the best outcome since I first thought it was going to be a tumor or something. Now i’m realizing it might be a lot more serious than it has been communicated to us through doctors. They are currently starting her IVG treatment. She can still walk with assistance but was feeling very frustrated I thought it was more of a one time get the treatment some pt then you’re back to what you were, because that’s what it seemed like. I guess what i’m asking is I realize this will be a hard journey and I want to be as helpful as possible. Any advice ? Do you think she’ll be able to get back to work at a reasonable time? She was planning on going back next week and works with her hands but i’m realizing that might not be realistic. Anything you wish someone did for you when you started recovery? Changes I can make around the house, etc? Any resources I can share with her that aren’t too scary? She’s been mostly interested in knowing as little as possible because she gets anxious and would spiral into worse case scenarios. Thank you in advance for any advice you can give me I’m grateful this sub exists.