r/guillainbarre

Has anyone dealt with Treatment Related Fluctuations? I guess it's the technical term for relapses.

I was diagnosed in early Jan, was back to running three weeks later (practically 100% normal) and then in March - started having more pronounced feet issues (numbness, tingling, etc). They got worse slowly through April, and now seem to be slowly getting better.

Has anyone gone through something similar? Neuro ordered EMG which suggested CIDP but nerve ultrasound came back as no evidence of CIDP damage.

(diktiert durch Sprachsteuerung deshalb schlechte Grammatik) Hallo oder draußen, Habe mir lange überlegt, Etwas zu da ich ehrlich gesagt Angst habe dass ich der einzige bin der immer noch nach zwölf Monaten gelähmt ist. Damit meine ich natürlich ich freu mich für jeden der gesund ist und wird und das ganz schnell, Aber ich habe Angst dass ich gelähmt bleibe… Ende Mai 2025 Bekam ich gbs d.h. ich wurde über Nacht gelähmt vollkommen und komplett. Jetzt nach zwölf Monaten Liege ich in einem Pflegeheim. Ich mache zwar immer wieder kleine Fortschritte sehr langsam Ich kann die Knie etwas hin und her bewegen Oder die Ellenbogen hin und her bewegen, Aber ich brauche noch 100 % Hilfe für alles… Kann nicht selbst essen oder trinken Nicht auf Toilette gehen mich nicht drehen im Bett, Kann aber Schon ein paar Stunden im Rollstuhl sitzen. Ich habe jetzt eine neue Rehabilitation genehmigt bekommen Muss nur noch Eine passende Klinik finden die auch mit so schweren Langen Verläufen Erfahrung hat. Gibt es jemand da draußen der auch so lange gelähmt war Oder bei dem es auch so ewig lange gedauert hat bis es irgendeine Verbesserung gab? Oder kann ich das jetzt aufgeben… Ich freue mich auf Nachrichten

I read this and it stands to reason that taller peoples legs and feet will take longer to recover from GBS since the distance from the spine to the feet is longer and nerves regenerate at roughly only 1 inch per month. I'm 6'5" with a 36 inch inseam so that puts my feet recovery at about 3 years? It feels like I'm at about right above my knees where the wonkiness starts down to my feet. Hmm......

hi there, first time ever posting. last Tuesday I got sick which we assume is the flu from one of my kids. on Saturday I was diagnosed with bronchitis and put on steroids. an inhaler, antibiotics and cough medicine and started it all that day. Saturday night my lower legs/feet and lower arms and hands felt like pins and needles. I've had weird nerve pain before so chalked it up to that. Sunday I waa pretty normal and cleaned house etc. Sunday night the pins and needles came back mainly in my arms and I barely slept probably from panicking about it. went back to urgent care today and he did a bunch ke things like push and pull and squeeze etc with my arms and legs and said there was no weakness. ran some electrolyte tests and all was good except potassium was the very lowest it could be to be in range. his theory is that it's probabky a combo of the high dose steroids and not great potassium so he pulled me off those and told me to eat some potassium rich foods and go to the er if i start slurring speech, lose use or hand or being able to walk. I'm still so paranoid though. tingling seems 90% gone in my feet right now but my arms and hands are bad and I swear my face feels a tad tingly. do I just keep waiting for something bad to happen or am I completely paranoid?

2 weeks ago on Sunday , I (F19) contracted food poisoning from eating undercooked chicken. A violent wave of vomiting followed and I was bedridden for a week.  On Monday of this week, my calves were hurting like hell, it felt like I had ran a whole marathon despite not having been outside in a while. 

On Tuesday, I was sending voice messages to a friend of mine and couldn’t breath while doing so, it felt like I was running out of air and that my body had forgotten the fact that it could breath automatically forcing me to manually breath, I was literally out of by simply talking which is uncommon for me as I was always very active person up to last week. 

On Wednesday I went back to school due to having some exams and as soon as I came back home it felt like I was having an even harder time breathing. I couldn’t stand up without feeling like I was about to collapse. Which is when I googled my symptoms and saw the possibility of them being related to GBS. I talked about it with my parents who quickly dismissed it, saying I was probably just tired. However, now my calves and my legs were both hurting.

On Thursday , my fingers started feeling weird as if they were retracting on themselves and after about 30 minutes I had difficulty raising my right arms fingers. They were shaking as I was trying to raise them compared to my other hand, I even manage to catch the difference on camera and it was flagrant. Later that night, I had troubles swallowing like there was always residuals of saliva no matter how much I swallowed and it felt a burning sensation in my left arms and i felt like my fingers were filled with needles. 

Friday I went to school for a exam and had a hard time writing with my right hand, I also felt like I was out of breath while simply sitting there and writing. On my way back home, it felt like I had to physically keep my left fingers occupied or else I was starting to loose all sensation from them same thing with my left leg, my fingers also felt insanely cold. 

Once I got home, the same thing happened again i could hardly raise my fingers once again and it felt like if I wasn’t moving them, they would disappear and go fully numb. I also couldn’t swallow properly water or any liquid. Afterwards later that day, my right toes started tingling and feeling weird. Those feelings kept coming and going.

Today,Sv Saturday, my parents took me to the ER. I could barely talk due to feeling heavily out of breath. The doctor basically told me that she wasn’t worried about me and that my symptoms were simple anxiety related to food poisoning and made me do a blood test and then sent me home.

The thing is, I documented my symptoms in my notes app and I can observe an obvious degradation so I was wondering if anyone could be me an opinion ? My parents are telling to wait and see my family doctor on Thursday but the thing is, with how quick my symptoms seems to progress I don’t know if it is a good idea to even wait. 

So Im approaching 23 months since onset. I went from being an athlete to this and psychologically Im still a mess trying to come to terms with this living nightmare. A lot of things have gotten better but a lot hasnt. Glacial improvement is putting it mildly. Does anyone else feel like they are in a nightmare they cant wake up from?

I’d like to share my experience with Miller Fisher syndrome in case anyone has advice, especially about two issues that still worry me a year and a half later.

It all started after several days of diarrhea. I began to feel better, but one morning when I woke up, I couldn’t focus my vision. It didn’t improve throughout the day, so I went to the ER. They referred me to a specialist, but by the next day my vision had become double, and I started to feel unsteady.

I went back to the ER, and they ran multiple tests, but nothing showed up. The following day (a Saturday), my vision got much worse, so I went to an ophthalmology emergency clinic. They told me it could be something more serious and sent me to a hospital for further testing.

After several days and many tests, I was diagnosed with Miller Fisher syndrome.

During my hospital stay, I lost strength in my hands—I couldn’t even open a bottle of water—and walking became difficult. I stayed there for 13 days. In the last 5 days, I received daily treatment (IV therapy). After that, my hands slowly started to regain movement and flexibility.

I was discharged and continued recovering at home for about two months. However, I lost around 7 kilos (about 15 lbs), and I could literally see my muscles disappearing. I also wasn’t able to have any sexual function.

I was 45 at the time, a healthy man with a slim build and a very active lifestyle due to my work.

After about 6 months, my vision returned to normal. Around the one-year mark, I felt like my energy had mostly come back. But my muscle mass hasn’t, and I still get tired very easily. Trying to exercise is difficult because the fatigue is intense.

My sexual function hasn’t improved either. I’ve seen a urologist and tried some medications, which help, but it’s not the same as before.

My questions are:
If you’ve experienced this, what helped with fatigue and sexual function during recovery?

I’d really appreciate hearing about your experiences. Thank you.

I was diagnosed with GBS on 4/27. One of my first symptoms was severe back pain at night, which has continued to persist. It’s like a deep ache, not the pins and needles type nerve pain.

I’ve been dosing up on Gabapentin since probably 4/29. I started at 100 mg 3x a day and now I’m up to 300 mg twice a day and 500 mg at night. So far, I haven’t gotten any pain relief from that.

With that said - how are you all managing the nightly back pain? Also, how long did it take for Gabapentin to start working, if you take that?

I was just prescribed this antibiotic for a UTI and I already have peripheral neuropathy (was diagnosed years ago), AND have also had GBS that I was hospitalized for on top of it a little less than 2 years ago.

After only taken 2, I looked up nitrofurantoin (THANK GOD I DID) and found out that it apparently CAUSES peripheral neuropathy and in rarer cases GBS, and apparently makes pre-existing symptoms and conditions worse, potentially with further permanent damage.

Taking nitrofurantoin (commonly known by brand names like Macrobid or Macrodantin) when you have pre-existing peripheral neuropathy and a history of Guillain-Barré Syndrome (GBS) carries a significant, high-risk profile for exacerbating nerve damage.

I'm legitimately freaking out right now because the numbness and tingling in my legs and arms is already starting to spike and feels different than my "normal" day of flares and general struggles I already have to deal with.

Has anyone else at all taken this medication that already had peripheral neuropathy and/or a history of GBS? I immediately messaged the doctor upon finding that out and am not going to take anymore of it, but I'm just curious any other experiences similar to mine please ):

Also, the doctor who prescribed wasn't my normal PCP, but one that I used on the new Amazon medical platform to be able to get meds for my UTI quicker and easier -- I would've never known or thought that even something as simple as an antibiotic could be a risk for GBS and neuropathy patients.

So also side note, wanted to also inform everyone to please learn from my mistake and never take this antibiotic if you have or had GBS or neuropathy- another thing added to the list of things you can't take or do with BS GBS.

28/F. Had a terrible flu with high fever last month.

Almost two weeks ago started to have tingling and terrible leg and back spasms out of nowhere - felt like I had worked out but I hadn’t.

This last week I’ve started having more difficulty with coordination in walking and doing stairs, but still can technically walk and do stairs despite difficulty.

It’s now day 12 and Neuro says reflexes are still good and I have some mild weakness that is kind of clinically borderline. Also still having terrible back spasms throughout and trouble with stairs and coordinating my feet.

Just had a clean NCS & EMG. Do you think I should go back to ER and push for a LP since I’m young and would rather start IVIG before I lose the ability to walk, or do you think this picture just about rules out GBS?

Thanks so much.

Im 4 months post-AIDP diagnosis and have been having increased discomfort and patchy numbness in my fingers and feet. I had an EMG today (didn't originally while in hospital) and they believe its CIDP based upon the markers. Im waiting to hear next steps from my neurologist, but will likely get another treatment to see if it helps symptoms.

Im curious if anyone else with CIDP made it months after original AIDP diagnosis before they got changed. If you made it that long, do you still need treatment every 3 weeks?

Hello everyone,

I guess I'll get straight to the point and ask, has anyone experienced that? I was diagnosed with AMAN gbs last year in July and got out the hospital by September, spent most of the remaining months of 2025 rebuilding muscles and connection in my legs. I have recovered probably around 95% now but these days I keep getting these tremors in my hands, whenever I hold something a bit heavy or try to keep them still or point at something.

Does anyone know if it's "normal" or do I have to check for something bigger?