r/guillainbarre

When did you start lowering your pain medication? I am still currently on all of my pain medication and things as I was coming out of the hospital. I am on hydromorphone, pregablin , and baclofen and nightly morphine.

When did the swelling in your feet stop? I’m having to wear compression socks but it is causing issues with my toe nails.

I was diagnosed in February of this year and have been working ever since to get better. I am currently still using a walker and a wheelchair for long amounts of time.

As the title states. I did five days IVIG and completed it on June 25th. I'm on day seven of inpatient PT/OT and last night my body felt as it did the day I was admitted into the hospital. Is it common to have flare ups similar to those prior to IVIG? My body is in so much pain, and I've been given pain medication, but the pain persists. The pins and needles in my toes, feet, ankles, fingers, hands and wrists will not go away. I have muscle pain that won't go away. I don't know if this is "normal" bc GBS is different for everyone.

Any personal stories that are similar are welcome.

41F. 125lb 5’5 healthy
5 years post Guillian Barré Syndrome.
I did not make a full recovery. I was hospitalized for 10 months. I’m still paralyzed from the knees down. There’s really no handbook for paralysis and I wasn’t prepared by the hospital for a long-term effects.

Right now, my toes have begun to curl under themselves. I have long thin toes and my second toe, the one beside my big toe, the first flange I think it’s called with the nail is flat on the ground under my foot. I’m walking with the nails flat on the floor. The other toes are following.

I can still physically uncurl my toes with my fingers. It doesn’t hurt to do so. But walking on top of my AFO’s is getting quite painful.

I believe the tendons have shortened. When I put a lot of weight on one foot say going up the stairs. It feels like my toes are gonna snap.

How do you correct this? Is surgery basically the only solution? And if it is, what am I looking at?
Thank you for your time.

Medication’s
Baclofen
Hydromorphone contin
Cymbalta
Lyrica
Latuda
Clonazepam
Vitamin B12
Zinc
Vitamin D

idk if i should even be posting this yet but i am so shaken up and just got home from the hospital. basically me and my friends went to the new great wolf lodge in webster and it was a total nightmare.

the first day we got there the chlorine smell was literally astronomical like u could feel it in your throat. we were all coughing a ton but just thought it was normal indoor pool stuff?? but the next day it got way worse. it was so hard to breathe but we went on a few slides anyway which was probably a mistake.

we went on the tallest slide they have and mid-slide i swear the air was just gone. it felt like i got the wind knocked out of me but it wouldnt come back. by the time i got to the bottom i thought i was gonna puke and i couldnt catch my breath at all. my mom had to call for help bc i was just gasping and nothing was happening. the lifeguards came over but they couldnt really do anything so they called 911 and i had to be carried out on a stretcher to an ambulance.

it was terrifying. they gave me some drugs in the ambulance but i dont even know what they were. my heart rate hit 190 in the ambulance and then it reached 200 at the hospital. the doctors said my co2 levels were super high because i was gasping for air that just wasnt there. basically the air was just toxic.

i finally calmed down and the coughing stopped once i was out of that air for a while but it should tell you there is a huge problem there. i know they had that big chemical leak in august where like 16 people went to the hospital and i feel like they still havent fixed the air or the ventilation.

has this happened to anyone else lately?? im honestly scared for people taking their kids there if the air is that bad. if u start coughing just get out of there seriously dont push through it like i did.

So, I stopped tracking with my Garmin back in February. Before that, my average HRV was usually in the 40’s.

I was diagnosed with GBS at the end of April and started tracking again just to monitor my health and steps during recovery. I would say I’m 99% recovered now (thankfully!

For my first couple weeks out of the hospital, my HRV was super low in the 20’s. However, beginning in June my HRV had a sudden steep incline and is now up to the 70’s for the past few nights.

I have not been doing much exercise outside of occasional walks. I probably get 5k-8k steps a day. No diet changes. Still eating garbage, TBH.

However, I’ve swam with my Garmin on a few times in the past month. It’s waterproof, so I don’t think that should cause any issue. But maybe it is causing an issue with the sensor? Otherwise, is it odd to have a random increase in my HRV despite no other fitness changes?

FWIW: my resting heart rate has also decreased from the 70’s to the 50’s.

I’m two months out of a two month hospital stay for GBS. The last few days I’ve had some tingling and numbness for the last few days. For those who have had residuals how long did it last? I have bad anxiety as it is. And j just don’t wanna worry myself worse. I talked to my physical therapist today at my appointment and he did some small tissue rubbing on my arms and hands that worked but only for a little bit. I’m still in a wheel chair and doing hard core outpatient therapy so I can walk again not that it makes a difference but any insight would help to ease this girls mind!

I'd like to share my story and experience with Miller Fisher syndrome. I'll preface this by saying that I'm one of the lucky ones, and I was never immobile, nor did I have any respiratory issues that required intubation. There are a lot of people that experience far worse symptoms than I did, but I hope that this post can still be of benefit to someone, or maybe even help steer towards a diagnosis. Due to the rarity of Miller Fisher, it seems like it gets overlooked by physicians, and treatment can end up being delayed as a result.

On September 18th, 2023, I awoke with double vision following a somewhat bizarre cold/flu episode. The double vision I was experiencing was due to an inward deviation of my eyes (esotropia), and was persistent in all planes of gaze and focal distances. I also had bilateral eyelid droop (ptosis), as well as fixed, dilated pupils that were largely unresponsive to light. I got around by keeping one eye closed at a time.

After visiting an urgent care/walk-in clinic later that afternoon, I was instructed to call a neuro ophthalmologist the next morning for a same-day appointment. The neuro-optho conducted a detailed examination, but ultimately no diagnosis was made, nor was Miller Fisher ever mentioned. He did say that the double vision was likely a result of the cold/flu episode I had just gotten over. I left with an urgent requisition for a CT scan and a blood test. Later that day, my family helped fabricate an eye patch as I could only use one eye at a time.

At this point, I was starting to get quite worried. I had no other symptoms besides the double vision, but it was all so strange. Google searches for non-traumatic causes of double vision returned conditions like myasthenia gravis and acute emergencies like brainstem strokes or even tumours. The next day, my legs began to feel slightly jello-y. They weren't weak per se, but I could feel something 'off'. I could still get around fine. I decided to go to the emergency at a nearby hospital - I hadn't had my CT scan yet. At the hospital, I was seen by the ER physician and a resident. Looking back, I think the resident suspected Miller Fisher (I hadn't even heard of it at this point), but he never brought it up. I ended up having my CT scan that night, and it came back negative with no findings. I was then scheduled for an MRI in two days time. The ER physician mentioned MS, but was ultimately quite perplexed.

The next day, my legs began to feel slightly more weak and jello-y, but I still had strength and could get around just fine. At one point, my Googling returned a condition known as Miller Fisher syndrome. I read dozens of case reports, and most of them matched my experiences to a 'T'. I was skeptical due to the rareness, but still, it gave me hope due to the potential for recovery.

After my MRI, I was visited by a neurologist who interpreted my results. He noted that the MRI indicated enhancement/inflammation of cranial nerves 4 and 6 - and explained to me that this was very likely Miller Fisher syndrome. I was incredibly relieved - while Miller Fisher is no walk in the park, the other potential diagnoses were worse. During this assessment after the MRI, the neurologist checked my reflexes, and confirmed that I was largely areflexic, providing further evidence for a Miller Fisher diagnosis. That night, I was admitted to another hospital nearby, to be treated with IVIG. Once at the hospital, a resident had me do a tandem gait which revealed some truncal ataxia.

I ended up spending 6 nights in the hospital, and received the typical 5-day course of IVIG. During my stay, the symptoms peaked. While I was still quite mobile, my core felt completely numb by day 7. The 'weirdness' in my legs persisted, and I began to have odd taste disturbances. At this point, my double vision was severe, and my eyes were about as crossed as they could be. I was never formally assessed orthoptically, but I estimate I had a combined 35-40 prism diopter esotropia, if not more. I also developed slight bulbar symptoms where food would sort of feel like it got stuck in my esophagus after swallowing. A lumbar puncture was performed which revealed elevated CSF protein levels with a normal white blood cell count, indicative of AIDP/GBS/Miller Fisher.

I was released from the hospital with no real improvement. I knew enough about the condition that recovery would be measured in weeks, and it was going to take a while. I went back to work - this was challenging for a bit as my double vision was still at its worst, and I found I often became strained and got headaches easily after only being at work for 6 hours or so. Gradually, over a couple of weeks, the leg issue, taste, and bulbar symptoms began to disappear.

My double vision was not improving at all, and I started to become quite depressed, and was convinced my vision was ruined for the rest of my life. These were my darkest days throughout the course of the condition. Nearly two months to the day after symptom onset, I noticed things were slightly closer together when looking right up close in a mirror. I took photos all the way from symptom onset, and sure enough, my eyes were starting to turn back out ever so slightly. Over the course of the next month, my vision began to normalize, but I was still seeing double. Progress was not linear - there were weeks when I noticed a big improvement, while some weeks not much changed. There were even periods where I regressed. My eyes were also better in the morning (objects were closer together), but began to fatigue later in the day. I had angular diplopia as well (due to a trochlear/4th nerve palsy), but this was also improving. I had two pairs of safety glasses, each with the opposite lens occluded that I used in place of a patch. I took B12, magnesium, and fish oil regularly. I also tried to elevate my heart rate by jogging in place and doing pushups - the idea was to help increase blood pressure modestly to help clear debris and transport nutrients. This probably had no real effect, but I felt that every little thing I could do to help recovery was worth it, no matter how futile it may have been.

I ended up regaining singular vision 87 days after symptom onset. I still had double vision looking to my left, and in some other planes of gaze, but I could see with both eyes. Recovery continued, and at 5-6 months after symptom onset, my vision was 95%+ back to normal. By one year (give or take), I was fully recovered. Today, two years to the day after symptom onset, the only persistent effect of the condition is that my left pupil is slightly larger than my right in diffuse lighting. The difference in size is small, and I may have honestly had this all my life - I can't be certain it's because of Miller Fisher.

If you've made it this far, I hope that this post has helped you, or has at least given you some information! Miller Fisher changed me, even two years on. When I was in the middle of it, I ended up contacting about 12 or so people on Reddit that had Miller Fisher in the past, and they all got back to me and shared their story. It really helped me through some of the bad days, and I'd like to 'pay it forward'. Please feel free to reach out or reply to this post if you'd like to chat about it!

Edited to add details about ataxia and CSF protein.

Hello! I know this isn’t a diagnostic forum but wanted to see what anyone thought, I’m already seeing a neurologist. For the past year my legs and feet have been burning/tingling/sweaty and numb. My doctor checked my pulse in my legs and said it was fine. Tons of bloodwork and no vitamin deficiencies found. Last week my throat started to feel numb, also in my mouth.

A little bit in my torso too. I went to the ER and got admitted. They did a brain MRI and said it looked good and no sign of MS. A few days before that I got a brain and spine MRI from my neurologist from an imaging place but the report isn’t ready, the hospital didn’t do a spine MRI. The neurologist at the hospital came in and talked to my husband and I and was very nice.

He said he thinks GB isn’t likely since I’ve had the burning/tingling/numbness in my legs and feet for a long time and GB has very quick onset of symptoms. He isn’t sure why my throat and mouth feel numb, but there isn’t any tingling in my throat or mouth I should add, just numbness. He said I need to wait for my spine MRI to come back from the other imaging place but as far as he was concerned he didn’t think there was any reason for me to stay at the hospital.

I’ve also lost my appetite completely, no idea if that’s related or not. I can drink water and eat but I don’t want to at all. All my blood work was fine, no infection. My mom keeps pushing it on me that it’s GB and I’m just so scared. I have a nerve conduction study July 11th, the soonest I could get, but I just wanted to see if anyone had any thoughts.

Vital info: 53m 88kg 1,85m that has been healthy and active my whole life. Former semi/pro athlete that after sports career has never had a desk job and was always walking between 6-8 kms a day. Gym 4-6 days a week.

Looking for advice and guidance if anyone has gone through this.

Last year end of May I was diagnosed with Guillain Barre syndrome and was rushed to ICU for 6 days for immunoglobulin treatment. Immediately after, I was bed bound with loss of mobility from my waist down. Issues with hands and upper body also but returned to normal quite quickly. Semi paralysis on side of face but also back to normal.

Had to lifted in and out of bed with a crane. Slowly feeling came back to my legs and feet after a month. Went to rehab and started walking with assistance of a walker and then with crutches. It’s been a long journey and mentally taxing.

Fast forward to today, I am able to walk short distances without aid or support. I am currently in the gym 4 days a week, swim 3 days a week (able to due to weight loss in water) great for stretching, losing weight and building muscle.

The issue is that my left quad (thigh) is not growing/responding at all. It is a bit stronger but it is half the size of my right quad. I cannot walk up steps unless I go first with right leg and then pull left leg after. Going down steps is not possible at all. Last week walking home from gym, I tried to step off a curb with left leg and it buckled underneath me as it hit the ground and I fell on my behind.

I am scheduled to do my second stint of in house physical rehab in the near future but am frustrated with where I am at 13 months after this happening.

Has anyone else experienced this or dealt with it ? Was the outcome close to normal and if when, how long did it take? Any ideas or suggestions for why the muscle growth has been silent?

Thanks in advance and wish you all a great day.

How long is a typically inpatient rehab program? What about specifically for axonal AMAN/AMSAN variants? My dad has essentially no feeling below his knees and has very little grip strength. He cannot get out of bed on his own, cannot walk unassisted, cannot go to the bathroom by himself, cannot shower by himself, and they still want to discharge him in a week (he has only been there a week so far). His house only has bedrooms and full bathrooms on the second floor and there is no way he can go up and down the stairs. Has anyone had success pushing back and extending inpatient rehab care? Any advice would be appreciated!

Diagnosed w/GBS in March after going to ER for TBI/Severe concussion. My memory of events starts with asking the person taking vitals Where am I, scared them terribly. They said I had been in ICU for 3 -4 days, undergone every scan, test, etc.. results from spinal fluid, confirmed GBS. IVIG treatment 4 infusion bags over 4 days provided my body handles it. Mid-way through bag 3 I start feeling better, after bag 4 I transfer out of ICU into ARU and begin learning how to stand and walk again over the next 3weeks. Trending upwards , getting around with a cane I'm sent home with outpatient follow-ups for continuing therapies. 4-6 weeks out, regression: legs on fire, strength plummets, and my balance is way worse. IVIG is scheduled to see if that calms things down, I'm hopeful because of the positive results from last time. Today was Bag 5 Infusion day.. never had any bad reaction or effects from the first 4, but by the time I got home, head is pounding, eyes super sensitive to light, my.head feels balloon like, hearing is worse, i can't sit up without weaving side to side, front to back and now I'm having those Flu-like symptoms chills and aches. How/Why is my body's reaction so different? Anyone have similar experience? How long will i feel like crap? Because of the head injury that I initially suffered my I can't remember all of the things he told me and it was my eyes I can't read the papers if they sent me home with at this time my poor eyes

I had gbs 2 years ago and am considered fully recovered. But I still get random numbness at times. Recently I had a weird accident when trying to get my cat from going over a fence when she got out. I ended up getting cut up and bruised on my left arm and hand (cat is fine!), but oddly, right afterwards my middle finger on my right hand went numb and tingling and has been for a few days now. Also my right toes are a little tingly. I can't figure out what I did to my finger for this to happen and just wonder if it's some sort of flare of gbs. BTW I got a tetanus shot the next day but the finger numbness started before the shot, so it's not related to that.

Just for people's reference. I had GBS in 2022 6 months from legs failing to +/- recovered, another 6 months to full fitness (likely cause a bad covid experience)

First dose of the Shingrix vaccine. 4 weeks later suddenly significant leg weakness, probably equivalent to 3-4 months into the original experience. Family doctor confirmed likely diagnosis of a symptom flare up, vs a full blown new episode, waiting to see the neurologist.

Not saying don't have Shingrix, but be aware...

my dad has hodgkin’s lymphoma for the second time since 2018.
we’re suspecting he developed gbs as side effect of Opdivo medication and his treatment.

are we still in the acute phase? he went 100% paralyzed neck down but his blood pressure is ok and he says his breathing i fine

what’s going on

update: they suspect it could be paraneoplasia hodgkin … syndrome?

I know being diagnosed with GBS can be a long, tough, scary journey. Watching my partner, Tim, go through it, I learned that a positive attitude and a dedicated team of doctors, along with motivational physical and occupational therapists, truly make a monumental difference. I made this surprise video to mark Tim’s one-year diagnosis this month. I was and continue to be so proud of him. I hope his journey can provide comfort or motivation to anyone currently dealing with GBS or someone taking care of someone with it. 🐢