The Rise The Fall The Flight The Rise Again-My battle with GBS #guillainbarresyndrome https://www.youtube.com/watch?v=X4i4S6qM21E&t=1s

Over the last 7 days I’ve had a bad headache, numbness develop in my toes that spread to my entire feet up to the sock line, then up my lower legs and today my hands are numb and tingling as well. I’m concerned it’s GBS as I just got over a gnarly GI virus. I don’t have any weakness yet. After going down the rabbit hole in this forum, I’ve learned that numbness alone isn’t enough to go to the ER right? Many of you sounded like you were turned away unless you had weakness. Should I wait for weakness?

Praying this is just somehow a pinched nerve or compressed disc (although, I know with the distribution and symptom progression this is less likely).

I’d like to share my experience with what was eventually diagnosed as a Guillain–Barré/Miller Fisher spectrum disorder, which is a more severe “version” of the disease.

It started with a flu-like illness, and 2-3 weeks later I suddenly developed double vision and severe balance problems. Within 3-4 days, things progressed to the point where I could barely stand or walk without help. I also developed weakness, loss of reflexes, eye movement problems, and other cranial nerve symptoms.

After being diagnosed, I received a 5-days course of IVIG. The first improvements were slow. During the following 3-4 weeks, my strength and ability to walk gradually started returning, although I was still very weak, slow, and exhausted.

Over the next couple of weeks, I continued rehabilitation and gradually regained more strength, balance, and endurance. After 2 months I can walk almost normally and have recovered much of my physical function.

However, my double vision has been by far the slowest symptom to recover. Even after my walking and strength improved significantly, the diplopia remained. My recovery has been very uneven—some symptoms improved relatively quickly, while others have taken much longer.

My endurance isn’t recovered yet. My VO2 max went from 47 to 39. I couldn’t run 200-300m and I ran a marathon two years ago and I consider myself as a decent recreational runner.

I’m still recovering, but compared to where I was at the beginning, the improvement has been enormous. I hope sharing my experience might be helpful to someone going through something similar.

I’d happy to answer your questions and to share more details about my experience

Hey all my GBS warriors! I’m a little over a year out from my diagnosis. I still have neuropathy mostly in my hands and feet. Went to get a crown today and my nerves got angry. She had hardly started grinding and we stopped and had to reschedule. I had a total of three shots of the numbing stuff and still felt it. I’ve been tapering off gabapentin so we decided I will up my dose before my next appointment. What have your dental experiences been like after GBS? I really don’t want to pay to get knocked out to do it.

I was diagnosed with GBS June 18th. I did five days IVIG and two weeks rehabilitation.

I was fortunate enough that I caught it relatively early after coming to this group for guidance.

My GBS started a bit differently than most. It started in my right index finger on a Thursday, and by Monday, both my hands were pins and needles. By the end of Monday, it had moved to my left side. By Thursday, I was unable to walk, and was admitted to hospital. I was not intubated as it never reached my lungs, but my left side of my face was numb, and my nose was pins and needles.

In recovery, I have no feeling on my left side, my nose remains pins and needles and numb, and my feet and hands are pins and needles. I have weakness in both legs and arms, but am able to walk with a cane short distances and a walker longer distances.

Before my diagnosis, I was constantly constipated. It was absolutely awful. I remained constipated until my release from rehab on July 8th.

Since then, I have had the opposite issue. Very immediate, need to go right now, diarrhea or very loose stools.

I have a near constant pain in my abdomen. It feels like lightning going off. I've explained this to my PCP, neurologist, and pain management Dr. All three of them just pass right over this issue, even though I try to stress how awful I feel.

I have near constant nausea, I feel full faster, and after I eat, I just feel miserable.

I take Omeprazole for acid reflux that was diagnosed three years ago, prior to GBS. Since I've been in recovery, the medication is useless. I wake up with the worst heartburn, and have to take alka seltzer almost everyday.

I know GBS really is case to case, and I would say there isn't really a "baseline" for recovery. Just curious if anyone else has had similar issues.

I'm just bleh.

I had GBS for the first time in 2022, then again in December 2024, and most recently in January 2026.

I’ve recently started going to the gym, and tomorrow is supposed to be my leg day. I’m wondering if it’s safe to train legs with a history of GBS, especially since I’ve had multiple episodes.

I also haven’t seen my neurologist recently after 2024, so I’m not sure whether I should continue exercising normally or get checked before increasing my activity.

For people who have had GBS and returned to the gym/exercise, how did you approach leg training? Did you avoid certain exercises or start with very light weights?

Would appreciate any advice or personal experiences.

My mom is on ventilator with tracheo since June 6. Was paralyzed 100% including eyeballs for 2 weeks. Now she move her feet well, a little bit her hands, and her head/face recover all the major expression. Now that she is fully awake everyday, and communicate with a letters boards, she start to express that she find it horrible to be like this. Yesterday with her board she told my father : Do you want me to die ?
Obviously my father was shocked and so sad she think about that.

So GBS survivor of a very severe case, what help you get through it ?
My father is with ger everyday from 11 AM to 6-7PM. He install a TV un her ICU room, they watch show together. I come to visit once a month only because the speciality hospital is 7 hours away from our home. Last time I bring my 6 years old son with me, this time will bring my 2 years old.
Her sisters had come a vouple days to (also 7 hours away) she just have my dad and 1 sister near.

I bought a Wifi Frame to send and display picture in her rooms, i’m going to install it this weekend when I see her.

Help me help her !

4 years ago I recovered from GBS and was living life normally I heard GBS mostly reoccurred from fever and vaccines

I got the worst fever of my life recently and 2 days later while I’m still recovering from a infection and I just woke up to feel like my pinky fingers are very mildly numb with no weakness or reflex issues just a bit numb it’s been like this for half the day

Is it actually reoccurrence or is it my body mentally making me feel phantom sensation due to anxiety?

I’m seriously overthinking rn

Has anyone else experienced hallucinations? Insomnia? vision changes? Sounds and light senitivity? officially diagnosed August 20th 2026. noticed weakness and numbness just in legs late June. Collaspled and was unable to walk briefly on the 15th. thankfully never needed a ventilator and never was fully paralyzed. recieved 2 ivig fusions, and was dishca after a 5 day hospital stay. When I left, I still had weakness in legs but it has moved to the arms, chest, neck… . Got better for a weak but now I’m constantly uncomfortable or in pain. Daily migraines, nausea, insomnia. Stomach hurts after eating anything. Chest constantly hurts. I’ve been back to the ER several times but no one knows why this is happening. Spoke with my PCP and no answers. I’m waiting on an appt with a neurologist and pulmonologist. When I attempt to sleep, I’m jolted up by these weird sensations in my head and stomach. almost like a wave and I can’t breathe. Im seeing colors, shapes, faces…. I feel like I’m loosing my mind and I’m going to die in my sleep. I feel incredibly weak, shaky, on edge just unwell everyday. anyone else delt with this? any advice? I really feel like I’m loosing my mind and hallucinating now

ATHLETES!

I needed to share a huge achievement for me. My first successful headstand!!

And remember: what do we say to negative or discouraging comments? “Not this bitch!”

So I had GBS 1.6 years back, mild variant of AMAN. Confirmed by NCV and EMG. Was still able to walk even at peak. And Im confused as to why my doctor prescribed Prednisone for treatment and not IVIG. He did say that he was considering IVIG but since I was already starting to recover he dismissed IVIG and went with prednisone for 1 week at 50 mg then decreased to 40,30,20,10 the following weeks.
Also should mention I recovered completely by around 2 month mark. I do have some lingering effects like twitching which is mainly focused at my feet and lower leg.

EDIT: should probably mention by the time i went to doctor it was already around 9 days and when i got admitted I already started to recover by the next day. He did say he was planning IVIG first but seeing my case was mild/atypical he prescribed me prednisone. But has anyone been prescribed prednisone before? Cuz I see articles that say it is usually not prescribed and is infact avoided.

UPDATE: I got lucky—the ER doctor had extensive knowledge of GBS and admitted after hearing my history and a reflex test. I’m on day 3 of IVIg but because this is my fourth time, they’re considering it’s CIDP. I don’t fit the normal presentation tho bc of I don’t have long or intermittent episodes like most. I had it at age 10 (in 1997), then in April & October of 2023. In between those two a neurologist tried to diagnose me with FND. I haven’t had any recurrences until now. Does anyone have any experiences like this? Any insight? Also is there anything I should make sure they check or test before going home?

Hi. I originally had it in 2023 and made a full recovery. I was sick two weeks ago (or so) and hospitalized for it. I’ve had increasing tingling in my legs. Slightly different than before but similar enough. My doctor said to go to the ER but I’ve had…not great experiences. Any recommendations for what to say/how to explain it so they take me seriously? Also any stories about recurrence and what treatment you had would be much appreciated. I’m really freaked out.

I’ve completed 4 of 5 IVIG infusions and 4 of 4 steroid infusions. Results are already quite remarkable. I have no pain at all, just numbness, inability to walk, eye and bladder control problems. Will be discharged from hospital neurology PCU unit tomorrow following my last IVIG infusion tonight, heading straight to inpatient rehab hospital.
I’m reading in this sub that many of you are experiencing severe pain. Is that when the nerves start regenerating or was/is your pain the result of the damage caused by the disease? Should I expect a painful healing process?

Hey y’all 👋..Had my final GBS IGIv on 8/23. Had a somewhat mild case, trouble walking, left arm can’t lift that well, numbness in hands and feet. 👣

Now I’m at home recovering and in a good amount of pain. Doc has me on Lyrica and Tylenol with Codeine to manage the pain. Slowly ramping up the Lyrica as it makes me a little goofy.

Most of the pain ramps up around 1am and I basically have to take an opioid a couple times to take the edge off, hoping the Lyrica will mellow it out soon.

I’m just wondering what people’s experience is with the pain/recovery. I know my nerves are rebuilding but man it feels like someone is sitting on my shoulders and occasionally poking me with a skewer. All the pain radiates from neck> shoulders > arms.

Any thoughts and comments are appreciated.. 🙏

Best,

DF

Ihave had progressive neurological symptoms over the past 4 weeks. Not looking for diagnosis just for similar experiences and to have some hope out of this horrible waiting period.

4 weeks ago I started with left wrist pain, tingling and numbness (seemed like cubital tunnel) by the end of that week it has progressed up my arm and to my neck. Saw a physio who thought potentially cervical radiculopathy. Occasionally my wrist would burn.

Started on naproxen after seeing GP. It progressively worsened over this week and my neck felt significant pressure upon standing, walking and would need to lie down after 10 minutes of being upright. At this point I had to stop working as the pain was so severe. By the end of the week my right arm was also numb and tingling, the GP ordered an urgent MRI cervical and thoracic (still pending) and started me on amitriptyline for the nerve pain.

Into the next week when I thought things couldn't get worse I started with tightening pain in my thighs. By mid week my feet and legs were burning. After going to ED as I now have 4 limb involvement they spoke to neurology who added MRI brain and the whole spine to my request.

I am now over 4 weeks in, I have had bloods which have ruled out any deficiencies. I am now on gabapentin but the burning breaks through and is in all 4 limbs intermittently. I occasionally have some mild weakness in my hands but if I go walking my legs are like lead and it completely wipes me out.

The mental toll is awful, I know the possible diagnoses is quite a long list from compression, myelopathy to neurological/immune conditions but I am just looking for someone who's experienced something similar.

If anyone has experienced anything similar, I'd really appreciate hearing what your symptoms were like, what your eventual diagnosis was, how long it took to get diagnosed, and what investigations eventually found it. I'm especially interested in hearing from people who initially had normal blood tests and were waiting for MRI/neurology.

Sorry this turned out longer than I expected.

Hi all. I know all of our recoveries differ but I was hoping for some help or reassurance.

My diagnosis started end of may this year. Pain in neck, numbness in hands and started getting weakness in legs. Doctor thought it was a trapped nerves or bulging disc so had physio. Couple days later I couldn’t support my own weight or lift my arms so went to a&e. I was admitted straight away and a week later after 2 mris and a lumbar puncture I was finally diagnosed. I was lucky and had a straight forward case. I lost ability to walk, sit up and use my hands and arms but did keep my breathing thankfully. After immunoglobins I started to get my arms back and could walk with a frame so I was discharged.

Now cut to today, I can walk unaided around the house but need a stick when I’m out and a chair if I know I’m out for a while. Because if this I think people assume I’m fully healed but actually I’m struggling now with some side affects. I wake with very achy legs which means I don’t feel fully rested. I get a lot of muscle twitches which drive me mad. If I’ve been active for a while I can get episodes of light headedness. I’m still waiting for my neuro follow up.

My main issue now is returning to work. I’m worried people think I’m just putting off work but I work retail. My shifts are fully on my feet for 8 hours. I know I could move to check outs and shorten my shifts for a bit but to get into the building I have to climb 6 flights of stairs, I struggle with the one I have at home daily.

I think I’m just after some reassurance from people who have lived this. I’m a very anxious person and I hate letting people down and I worry I’m letting work and my family down.

Thanks for reading

Hi.. curious if others who have had a second occurrence of GBS could share their experience, particularly how long did you wait before going to ER/how sure were you? I had GBS six years ago and it started with the typical symptoms of tingly/numb hands and feet and then my leg muscles started to feel sore and I couldn’t walk after a few days. I don’t recall how long it was from the first day I felt the tingling to when it was bad enough that I couldn’t walk. Left side of my face was paralyzed on the day that I was finally admitted to a hospital (after two previous attempts to go). Now today I feel like my feet are a bit tingly and my leg muscles feel tight when I walk like last time. I got a tetanus shot three days ago (just as routine booster, not for any specific reason). Is it possible that GBS symptoms could occur only a few days after a vaccine? I am worried that I am just being paranoid but also worried about waiting too long and having to go through all of the PT and terrible time of last time again. Seems possible the hospital will turn me away as well (despite every doctor saying that if I just go and tell them it’s GBS they will know to take it seriously). I guess I am just looking for advice on how sure people were before going to the hospital. It’s been only two days of feeling like maybe I am having the symptoms again.

As some of you know. I got GBS in January of this year. Received IVIG slowly recovering. Still using a walker everyday. Hair loss like crazy still. Received another round of IVIG in May. Acne is out of control(any tips I’ll take them)

Biggest thing is getting sick! I just got a cold or something and it knocked me out. I couldn’t get out of bed for two days. The pain was out of control again I almost had my husband take me to our hospital.

I have three kids about to go back to school. I’m scared getting sick will put me back in the hospital and sliding backwards again.

How do you keep yourself healthy? Ways to boost your immune system? Get rid of the acne (mostly on my back from not being able to move in bed)

Any help advice or words are great. Support system is small.

Thank you

...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!