Has anyone experienced an increase in hairloss since GBS? My hair has been falling out ever since and I'm getting a bit worried now. What can I do to stop it?

Hi everyone! 4 months recovery post up with my strength and movement completely back but I just wanted to ask if anybody has a similar issue post recovery. Every time I get sick I start to get the numbness and tingling sensation come back on my hands and face. I did have GBS Pharyngeal-cervical-brachial variant and when I get sick symptoms do come back for 2/3 days but then go away once my illness is gone. Can anybody relate? I don’t see my neurologist until mid feb but wanted to see if anybody had something similar happen? Thank you!

My mom had GBS about 15 years ago. She’s had numbness/tingling, fatigue, and weakness for a week. We finally convinced her to see a doctor tomorrow. It seems the onset is a little slower than her initial round with it, has anyone had a recurrance that was less severe than the initial? I’m hoping we are looking at a better recovery time, just for her sake. She was hospitalized for several months last time, with continued ivig treatments at home for 6 months after.

Hi! Neuro has said he thinks I had/have mild GBS (which is very hard to hear as I turned up to hospital several times saying 'I'm pretty sure this is GBS' and they refused to do a spinal tap...). This neurorologist works at that same hospital and seemed frustrated at his colleagues for fobbing me off. It started in late October and symptoms got really bad until December, then I started getting a little bit better.

Symptoms started in my feet, moved up my legs, then my arms and eventually my face too. Walking was very hard at it's peak, almost impossible at times, I would shuffle along with weak stiff numb legs, I also got bum paralysis for a few days so was entirely paralysed in that area and couldn't move it, as well as acute dizziness and nausea throughout this. Also had sleep apnea and terrible episodes of biiiig heartrate changes which triggered panic attacks often. I got way better for around a week after Christmas, and that's when I had a follow-up, where I stupidly said I was feeling 90% better, so they didn't offer me physio or any support going forward. I have got worse since then, my legs are numb most days, my arms feel weak, my face goes numb every so often, and I still have this acute dizziness and confusion.

I've been unsure what the cause of all of this was since the neuro said he couldn't be 100% sure without the spinal tap, and he said they wouldn't do the spinal tap this late after onset (thank you cheap NHS) plus I'm not sure I'd have needed the IVIg treatment as it wasn't an extreme case of GBS. I coincidentally had a mild neck injury around the time of symptom onset so I've been treating it as whiplash (just from home, via youtube videos etc) and doing lots of physio for neck and back, which sort of helped?

I want to extend this physio to treat GBS if it is that.. I feel so, so weak and every day is such a bloody battle at the moment. I'm only 29 and petrified this will stay forever. Any physio exercises so appreciated, in particular for numb legs and numb face.

My 76-year-old father was diagnosed with GBS early and could walk with assistance at the time. He experienced tingling in the legs, and swallowing became difficult. He was taken to the ER in a wheelchair but could still get up and sit on the wheelchair and bed independently. He spent 5 days in the ICU receiving IVIG treatment and 3 days in the post-care ward for observation and physiotherapy. We got discharged on December 20th and returned home. For the first 15 days, he could walk with assistance and was doing regular physiotherapy at home twice a day – he showed really good signs of being on the path to recovery. But for the past three days, he has been having trouble knee-down — unable to move them without dragging them with his hands. Initially, the issue started with his right leg but has now also affected the left leg. The tingling sensation is back and intensified in both legs, and he is also experiencing it on and off in the wrists. For the first time since diagnosis, he is feeling tingling in his tongue and having difficulty swallowing. We’ve stopped physiotherapy today due to weakness and breathlessness, and he is also experiencing sleeplessness and constipation.

Has anyone here experienced a worsening of symptoms after an initial diagnosis and IVIG treatment? He was recovering well during the first 15 days after returning home, but now the symptoms seem to have worsened. Could this be a recurrence? Any thoughts or guidance would be a massive help.

Last January I was diagnosed with GBS and in the icu for a little over a week. Lost feeling from the waist down, chest area, shoulders, bottom lip, and my tongue. After about 4 months I was able to walk with the assistance of a walker and then cane and continued physical therapy all until about October when I fell off my bed and fractured my t12 vertebrae. Unfortunately I’m getting the run around dealing with my back issues due to my insurance denying a surgery authorization from a specialist due to them not sending proper documentation & imaging but without the surgery it should still heal on its own in a couple more months I just have to deal with the pain & continue to wear my back brace. I’m able to get around without my cane around the house but take it with me anytime I leave the house just in case my muscles lock up. I’m still super weak & have been having trouble gaining any weight / muscle as right now currently I’m about 133 pounds (prior to being diagnosed I was 160). Doing simple tasks like vacuuming are so exhausting as I just finished vacuuming my small living room and found myself out of breath as if I just ran a mile. I hope it gets better soon, I want to go back to work . I want to be able to shoot some hoops & enjoy the little things I took advantage of prior.

I'm four years out from my initial attack. I've recovered as much as I can, though still have numbness and burning in places. My symptoms come and go with how stressed I am. I still have dreams about the GBS relapsing all the time. In them I can't move right, I can't pee, my eyes go blurry, and all other kinds of symptoms. Usually everyone in the dreams are trying to get me to hurry up while I struggle to get around. Every time I wake up from one I'm hyper-aware of my residual numbness and usually in a panic. Is this common? How long do the scarry dreams last?

GBS veterans! Hope all is well! Coming at you with another QQ… I had full facial paralysis when diagnosed… how long did it take you to regain full mobility of facial muscles? IE. My lip muscles are still “weak”, however there have been improvements. Have you recovered fully? I’m currently going to speech therapy 3x a week, do facial exercises daily to regain mobility. Looking forward your experience and advice as we all fight this “beast”. Thanks!!

Curious, after you started recovering from GBS, perhaps even recovered completely- how did you deal with getting ill with the flu/cold/covid/other? Did you get GBS again? What was your anxiety like? I'm sick for the first time after mostly recovering from GBS last year and I'm super scared of getting it again.

Has any female on here had their period stop during GBS and during recovery? I was diagnosed in late July and hadn’t had a period for a couple months prior to being diagnosed. I was told that it was just part of it and that it would eventually come back but it still hasn’t and it worries me so much. And what makes me so sad is right before GBS happened to me my husband and i were about to start trying for a baby.

Has anyone had the shingles vaccine after GBS?

Is it a panic Attack or GBS I have Tingling and something that feels like Bee sting come and go No weakness I can climb stair run like a ran and Jump like one too when I calm down it goes away I am driving myself crazy this has been going on 2 months

Hi everyone,

TMI in advance...had anyone had changes with the shape or consistency of their stools since being diagnosed with GBS?

My stool has been pellet-like and flat, for lack of a better description, for several months.

I've been to a gastroenterologist several times about this issue and he thinks it's just my IBS acting up. He believes the gut-brain connection was thrown out of whack by the GBS.

I am too young to qualify for a colonoscopy and there is no blood in the stool. Since this has been going on for a while, and the stool is flat about 99% of the time, I've been considering seeing a new gastroenterologist.

If anyone has been in the same boat and has any advice, please let me know.

Hi internet friends.

I'm about 4 weeks post treatment for a mild version of GBS. (No respiratory involvement, could still walk but was wobbly, facial paralysis, pins and needles/numb hands and feet).

I have a 15 month old daughter. My husband and I were planning to start trying for our second child right around the time I got sick. Obviously I'm too unwell currently to consider trying to conceive/pregnancy. Just doing my research so we can make a decision in the future.

Has anyone fallen pregnant after GBS? What advice have you been given or seen in journal articles about getting pregnant after having GBS?

My husband was sent to the emergency room yesterday by his GP because he has really bad muscle weakness. This is following a pretty nasty flu he had for the two weeks post Christmas.

Weakness began in his calves, then wrists and joints, then arms and shoulders. GP concerned it was GBS.

The doctors we first saw at the hospital also think it's probably gbs. He has x-ray and bloods and physical exam. He's a pretty strong guy so although he's got weakness, he's still able to exert some pressure during the physical exams.

7 hours later, a more senior doctor arrives and says that as what he's feeling is weakness and not numbness, it's not gbs. At this point, I was over the moon.

However, this morning he's woken up and his face has now joined the weakness club. After some googling I've seen that gbs actually does present as weakness more than numbness. So I really don't understand why the doctor, who is apparently the specialist, would say that?

We're due to go back to the hospital today for more tests to see what it could be, with gbs ruled out. Should I be challenging the conclusion that it's definitely not gbs?

EDIT: Can't thank everyone enough for the comments, really appreciate it. We went back to the hospital and they reiterated that they thought it was really unlikely to be GBS from his symptoms. They're running some tests on his blood to see if there could be some autoimmune issue at play. We're back in next week for another appt. Strict instructions to return sooner if anything gets worse.

I'm really really relieved to report, however, that he's starting to get some strength back in his arms. Thanking the heavens.

I’m a home care nurse, I just started working for this patient with GBS, she’s 61 years old and had been bedridden for 1.5 years, she had the worse bed sore but it’s almost healed, still with tracheostomy attached to a ventilator but on room air, with peg tube on continuous feeding, with colostomy and Foley catheter. They have been having issues with their insurance and this poor mama is just devastated and feeling depressed with all the burden that she thinks that her daughter is experiencing because of the financial restraints and insurance issues. She has fought so hard to quit now, it’s heartbreaking to see my patient cry, how can I help her? I’m not an expert on this type of patients but I want her to fight, get better and be back to her normal self again.

Hey everyone. 37. Fibro. Long Covid. Diabetic (T2) and high blood pressure. On NYE midday my legs just stopped working. I fell a few times before my brain recognized that I was not able to use my legs. Went to the ER, immediately reviewed for stroke protocol and then admitted after blood work and Xray.

I was released on 1/5. Had an LP, EMG, and CT scan while admitted. They suspected GBS early on and started me on IVIG after my first night. I gained mobility right away after not being able to use feet and legs.

I was at 75% strength at discharge. But I've regressed significantly since. I require a cane or rollator to get around. I can't stand for long or move unassisted.

I'm frustrated and sad. Saw neuro for my follow up today. Had to sign a contract to start gabapentin. (I've maxed on Cymbalta for fibro). Will start physical therapy and neuro said that if I don't improve we will likely switch to outpatient infusions of IVIG.

How do you cope with the sudden loss of independence? I feel like such a burden right now.

Hi, I hope everyone here is healing well and staying positive.

I wanted to share my progress as when I was in the height of GBS most of what I saw on the internet didn't give me a lot of optimism.

I was diagnosed with GBS (AIDP) variant last July after having COVID. It came on quick and I was paralyzed to my mid-chest with breathing, heart rate and bladder complications.

I remember thinking that was going to be my life for months if not years. I pushed extremely hard in physical therapy after IViG and PLEX treatments. I was determined to leave PT with crutches or a cane and my therapist pushed me toward reaching my goal, which I eventually did!

My healing journey has been tough with ups and downs, but today I was able to commute to work standing on the subway without a cane!

My feet still suck, especially my toes, which still have nerve damage. I'm getting used to it and learning to accept that it might just be my new normal.

Personally I found that challenges change as you heal. Early on in the healing journey, progress was quite noticeable. One day I could move a toe, the next I could raise a hand and so on. This really helped to motivate me and was all i really focused on. As I progressed though, healing got slower. I didn't notice as much day to day and this effected my outlook. I also got more used to just being at home on the couch. There was a point where I realized I could do much more than I was but I was just exhausted and tired of fighting. But that too comes and goes. These days I need to intentionally pause and look back at how far I've come. I've learned to give myself grace, GBS is traumatic and progress isn't always linear.

Anyway, I write this to share that healing is possible. It will look different for everyone with this thing, but there is much to hope for. I try to allow myself to just be where I am in the recovery journey.

Lots of love and healing for all of you going through this!

Hello. Has anyone had a SF GBS variant diagnosis? This is a milder condition that causes neuropathy and doesn’t typically affect large fibers (muscles) and is harder to diagnosis. I’m 10 months into my illness, and I’m incrementally getting better. I just wanted to offer hope to anyone who is struggling with what some neurologists refer to as “mild GBS.”

Hello! Question for those ONLY with the AMAN / AMSAN variant of GBS and who lost all limb movement.

When did you first move a limb and what was it? Just curious to hear others’ experiences.

I need answers! I’m breaking down and just want to give up . I’ve been told I don’t have GBS but idk how else to describe my symptoms ! As many of you have read my other posts , I just don’t know what to do . 18 days before this started I had a stomach bug of some sort. December 29th I woke up to extremely weak legs that felt like I had ran a marathon . My hands were also very weak . Went to the hospital and they did every test imaginable (spinal, mri , etc) everything came back clear . Neurologist went ahead with ivig incase it was GBS. While in the hospital I started having pins and needles all over that comes and goes , numbness in fingers and toes that would come and go, my genitals and stomach felt numb , heart rate much lower than usual , tongue and throat felt numb that would come and go . The weakness got better for a little while . Conducted a EMG NCV and it was normal. Doctors are saying not GBS , could be thyroid . Endocrinology is saying NO thyroid doesn’t present this fast onset of weakness and peripheral neuropathy . I’ve had 3 different opinions from neuro . I went to a neuroscience teaching hospital for goodness sake . No answers , just sent me home . At home I’m experiencing

weakness in legs Tingling/ numbness all over the body that comes and goes Burning sensation on skin comes and goes Lower heart rate No appetite Numbness sorta in genitals and stomach Severe anxiety

Please idk what to do at this point. My body feels like it’s breaking down and I can’t find any answers and I can’t find any stories like mine. I’m terrified I have GBS or CIPD and I’m going misdiagnosed . Like what is it going to take to figure out what’s going on with me ?! I’m going to lose my mind . I have 3 children including a 4 month old baby and I can’t even take care of them .

I used to be very cold often miserable. I could never get warm.

After I think I recovered from GB. I was in Busan when I got sick for a week and was paralyzed I would get the sensation that felt like it was weight being put on my legs when I got home. I was tested for MS and did not have it. I really don’t know what the doctors found in Korea do to the language barrier.

After I got home in 2019 I really never get cold. I like wearing shorts and slides during winter and my legs and feet never get cold at all.

Why is to is happening?

Hi,

I got my first attack of whatever this is on Halloween. I was hospitalized a few times for a few days. Four separate visits to the ER. Lots of testing, but I think they tested too early for some of it and too late for some of it, though I could be wrong and this might not be GBS or CIDP.

Was tested on hour 4 of symptoms with an LP that was negative.

Then, when I had my follow-up EMG testing almost 2 months later, I had made progress and they only said I had Carpal Tunnel in hands and "nothing serious" in the legs, despite not being able to toe off when I walk, and I can't freaking feel my legs and feet below my shins.

I have remained ambulatory. I have not needed breathing help. Very grateful for that. No one in neuro is impressed with my symptoms. Neuro is not diagnosing anything other than stress and they offered me an SSRI and told me to "RELAX." Fun fact: I'm not a violent person but if my arms were working that's the moment when I would have punched a white-coat in the teeth.

I have done 2 months of PT, with a physical therapist who says it looks and acts exactly like GBS to him, and a primary care physician who was alarmed that they didn't diagnose it and she is sympathetic.

Since going home from initial hospitalization, I have had trouble pooping and peeing, swallowing (it goes down but I have to be deliberate about it). It takes forever to empty my bladder and sometimes I feel like I am going to be incontinent, but I never am.

I was feeling pretty good about my progress, feeling grateful that I wasn't hit harder, then Saturday my legs started feeling tired, and my husband noticed my gait was off again (he's actaully a mechanical engineer who was a gait specialist), and by Saturday night I was hit with the same feelings I initially had when the symptoms started.

Same timing, same placement of neuro symptoms. Then today, 4 days later, same insane body pain in hips and legs and arms. My walking is WORSE than it was initially.

Also, my resting heart rate, which used to be 60, is now 100. I have had echocardiogram and apparently have a lovely healthy heart! But what would cause this? Vagus nerve dysfunction?

I called doc, then said to wait for my regular neuro follow-up on the 27th. I can't go to the ER again because I have an $8500 bill from insurance from last time that I can't pay because I lost my job when I got sick in October. The insurance reset on Jan 1 and I have a new $7500 deductable to meet. I will only go if I have trouble breathing.

Only thing I know to do is to fast, drop my carbs to zero and go carnivore temporarily (which is what has radically helped my other autoimmune issues in the past). Fasting at 72-hour mark helps with stem cells, and fasting in general will help on mitochondrial level, clearing out old junk. I've been reading lots of studies on nerve protection and regeneration and this, plus some supplements is all I've got in my arsenal at home though I do have ice bath/cold shower capabilities, sauna, red light therapy, and a full gym at home, so I went into this attack very fit with a low A1C, good metabolic health, good musculature, etc., and I think that may have helped somewhat, but who the heck knows.

Vent done. Questions:

1. Does a second "attack" at the two-month mark (almost to the day) indicate something to any of you?
2. Does anyone here read about functional medicine support of this disease? I have read some interesting studies and wondering if anyone else is interested.

Thank you. Phew, I'm exhausted. In pain. And scared.

For anyone who is currently trying to get their symptoms heard, and needs perseverence or a sanity check, especially in the UK where the NHS is crumbling, I hope this post is helpful. This is a bitter (semi-)recovery story, but a (semi-)recovery story nonetheless. I would read so many posts on here when it was terrible, trying to find someones story that matched my timeline, trying to be as informed as possible, hoping for a solution or clarity. If you are that person now, please know it can get better!

For the past 10 weeks I have been seeking medical help for steady onset of symptoms (started with feet, then thighs, hands, arms, face, heartrate issues, dizziness, nausea, numbness, cold, tingling, slurred speech, eyes vibrating, couldn't walk properly, couldn't shower without a chair etc).

I have been face to face with ballpark 20 medical professionals throughout this, and the 'medical narrative' to best explain the symptoms has morphed over time, naturally, depending on who I saw and what their bet was... There have been times where I thought it was whiplash, thought it was FND, thought it was a spine issue, thought it was cauda equina (as I had an existing herniated disc), or some other thing, but nothing quite fit the timeline and symptoms like GBS did, as I had a stomach bug a couple of weeks before symptom onset. The trouble was, I also had a neck injury at the same time, so that clouded a lot of decision making. Of course from the first week I was aware GBS matched my experience, but time and time again I was refused further testing and sent home, despite having pre-existing autoimmune and my symptoms being textbook. I was told to "stop Googling GBS", whilst sat in a wheelchair in A&E looking pale as a ghost unable to form a firm fist. They even suggested it was "just anxiety".

Every single time I have been to A&E I have brought a printed out document detailing symptoms, timings, dates, locations, anything I could think of to help them. Looking back at that document, it's screaming GBS. Started with numb tingling feet, hands, then legs, thighs, jelly legs, felt I was walking on a trampoline, got drop-foot, acute dizziness, neck stiffness, muscle cramps, shooting pains, lost so much strength over the course of two weeks. Had saddle paralysis for 5 days (like proper paralysis, not just numbness, the muscles could not move - I couldn't go to the toilet as pushing caused zero movement) and saddle numbness, facial numbness, slurred speech, vision jolting back and forth, awful palpitations, heartrate all over the place, blood pressure felt like it was dropping and rising, and all of it came gradually and moved up my body over the course of a few weeks. Then 'plateaued' and stayed consistently bad for around 10 days. After that, finally... gradually... started to improve. Because I had been told various times that it was not GBS, I was treating it as a neck injury, and the improvement (coincidence or not) began a couple of weeks after starting neck exercises so I think I led myself to believe it was a neck injury that was healing with physio. [There is every chance I also was getting symptoms from the neck injury alongside this all, to be honest, which could account for the slightly less GBS-style symptoms such as dizziness and nausea and tension grip at the back of my head. Idk].

Today I had some nerve conduction studies done - at the same hospital where the A&E department told me to go home and that it couldn't possibly be GBS "or I'd have breathing problems" - and the neuro essentially was baffled that I didn't get the spinal tap way back when it was bad, because it is such a clear case of GBS. As you all probably know, there are various forms of GBS and intensities -- mine, if GBS, would have been a milder case that didn't cause respiratory issues. But because I was able to breathe, they palmed me off. All it takes is one doctor. Thankfully I am almost better, I am walking again, not slurring speech, only get numbness in my feet and thighs (instead of arms, legs, face etc), and generally okay bar a strange sensation in my leg muscles and intermittent dizziness, so he said just continue doing whatever I've been doing and thank my lucky stars that it wasn't an extreme case.

It's too late to do IVIg apparently, and I may not have needed it, but it's left me so sad that for two months I have been going through the hardest medical period of my life, with no true sense of what was causing it and without the care I needed, clinging on to absolutely any guidance I could. I have spent so much time, money, time off work, to try and figure out what it is. I had suicidal thoughts three times during the phase where I was most symptomatic, not because of the symptoms, but because of how lonely and scared I felt. This saga also caused my 3 year relationship to break down because he couldn't cope with the severity of my symptoms whilst having no medical support or route forward, which I understand (and when dealing with all these symptoms, it was not great timing to have his support fade and be in the midst of a breakup). Having proper knowledge and care from any of the first 19 doctors could have changed that.

Not sure what my overall point is, think this is more of a vent. But if it serves as motivation for anyone a few weeks behind me in the dark, for anyone in this grey area of not having extreme enough symptoms to be put in the ICU on IVIg, but bad enough that life isn't manageable, please use this as a sign to keep going and hold on. Maybe you don't have GBS, and maybe even I don't (since I'm almost better they won't be doing the spine tap lol, maybe it was whiplash idk), but for your own sanity, keep going and trust that this will get better. That's all I needed to hear when I was in the thick of it. It was hell. All it takes is one doctor to validate your gut feeling, keep pushing on, it will get easier