First of all, I hope everyone is doing okay. My friend’s girlfriend has suddenly developed a very severe form of GBS. Although we have highly specialized doctors here, they are at a loss and can’t find a way to help her further. She is suffering a lot, and it seems to be such a rare form that the doctors have never encountered it before.

I want to support my friend during this incredibly difficult time. He mentioned that his girlfriend is considering euthanasia if things don’t improve cause of the pain. I’ve been texting him to check in, but I want to make sure I’m doing everything I can to be there for him. Any advice on how I can support him better?

Hi guys,

I'm sorry for posting this but I'm just looking for some insight. About 3-4 days ago I developed a slight numbness in my thumbs and fingers and the next day I got weird hot tingly feelings in my feet. Today the tingles/heat aren't so bad but I'm kind of having joint aches/muscle aches and I'm getting really worried it is GBS. I don't know if my muscles are weak but because of the aches I feel like they are I don't know.

I went to a doctor yesterday and she took some bloods and my history. I haven't been sick recently. She thinks it might be because of an HHC vape I tried but she took the bloods to check for vitamin deficiencies too.

I feel like I've done what I need to do and just wait but I'm scared it'll progress. I don't know what to do.

Update: my face has started feeling a bit numb too but not my arms or chest or anything

I've posted my story many, many times on here before, with this being one of my most recent posts. This post explains it in great detail, both are posts in the "long COVID" subreddit. The gist is, in late 2020 I began having a weird feeling neurologically, first with brain fog/a general feeling of un-realness and memory issues, then a weird dull headache at the top of my head, and then sudden neuropathy, muscle twitching, ear ringing, coughing, intense burning in my face, sinus issues, and just a ton of vague neurological problems that lasted for years. I wanted to go to an ER one night during the worst of it early on (about a month in), but could not due to dealing with my mother's terminal cancer at the same time.

The neuropathy began from my head downwards, first starting with left-sided facial/neck neuropathy, and then the rest of it. It was never loss of motor function or bell's palsy. It all seemed like purely sensory neuropathy.

I also had watery, at times bloody mucus on and off for about 4 to 5 months from the start of the illness. That eventually went away by spring 2021.

Until maybe the beginning of this year, I used to wake up every day and not be able to fall back asleep because I'd suddenly get an intense burning pain in my upper body that would last for about an hour. I still get it to some extent some days when I wake up, and sometimes during the day. This all seems very autoimmune to me, but I still have no proper diagnosis four years in.

I had to wait about a year to see a general neurologist (I saw a neurosurgeon about 4 months in because they thought I may have idiopathic intracranial hypertension but didn't think I did. MRIs done in 2021 implied I did due to partially empty sella/CSF buildup in optic nerve, but MRI done last year didn't mention those findings, but did mention a pineal cyst). The first neurologist was immediately dismissive and only saw me once without further testing.

The second neurologist did testing, but was not communicative or very interested in me at all, never explained what he thought were the reasons for my abnormal MRI (I have encephalomalacia), and was also sued for malpractice and settled while I saw him. He always came off as quacky to me and I didn't like him, but I was stuck to him due to Medicaid and living in a small state (RI). My PCP wasn't very understanding either.

I went to a third neurologist who wasn't helpful either and dismissed me after one visit. I didn't see neurologists that specified on what could of been chronic autoimmune issues, and instead went to general neurologists that specialized mostly in headaches and less complex subjects. Nobody helped get me to people who may have been able to diagnose me.

I saw a fourth neurologist this year that does actually talk to me and does seem interested in my health situation, but says that since it's been so long, a spinal tap would've be useful now, and steroids such as prednisone wouldn't be helpful now either, and he said it would've carried risks if done long term early on. He did another EMG/NCS of my left arm that was clean for nerve damage, but the neuropathy I've had since 2020 in the left side of my face, neck, and genital area is still here.

My current neurologist referred me to somebody higher up in his neuromuscular department, and I'm supposed to see them next year, but is there a point? The neuropathy seems permanent, and since it affects my genitals, my sex life is basically over. I have ED/anorgasmia issues and have had them for four years now. My memory issues are better, but still not good. I used to have an amazing memory and there's memories I have lost.

As I mentioned, I have ED and anorgasmia now along with the neuropathy that affects my genital area. It's just on the left side for some reason. It used to be tingling/burning on the left side of my genital area and face and now is reduced sensitivity issues. In 2021 I had a very sharp pain on the left side of my penis when I touched the right side of it, it was very scary and made me believe the nerve may have died, but that went away with very slow improvement, but that side is still not back to normal. The neuropathy feels like it's solely in the left side of the head of the penis now, where that sharp pain used to be over 3 years ago.

My current neurologist also sent letters out saying he's leaving his current practice, meaning I may have to find yet another neurologist. I was told he would be staying in my state, but just moving to a different practice, so I may be able to keep him as a patient if I find him elsewhere.

I feel COVID may have caused a Guillain-Barre syndrome-type reaction in my body, where my nervous system shat the bed and caused me nerve damage, brain damage, and other issues. I don't know if I ever had viral meningitis or encephalitis either, because no spinal tap was ever done. I am only guessing that COVID did this due to 2020 being when the worst, original strain was still around.

I recently was confirmed to have COVID last month and it was just a somewhat annoying head/chest cold, but eventually fixed itself.

I don't know what to do. I still have the on and off ear ringing, the neuropathy I feel daily in my face and my genitals, and it has ruined my sexual activities, my memory is still not great, I just generally don't feel good, and haven't for four years. I live in a meaningless state without good medical infrastructure due to luck of the draw with who I got for parents and I'm just left to suffer for the majority of my life while everybody moves on. The doctors don't care, nobody cares. I don't deserve to live like this. Boston is just one state over and nobody would refer me to MGH or a hospital with maybe staff that could've helped me. Instead I was stuck with neurologists in RI who get bad reviews and get sued.

Is there even any chance of finding out what caused this to me after four years, or is it going to be eventually "Yeah you have permanent nerve damage, but we don't know what caused it since it's been too long". What's the point of that?

I have included a fair amount of the testing I have had done since 2020 below. If anybody has any questions or advice, it's appreciated. I'm feeling like I should've pushed harder when I first fell ill, and forced myself to go to the ER, but my situation was so stressful and scary with my mother's terminal illness, and I never thought whatever it was I had at the time would be lingering four years later.

Testing

I had a CT scan of my brain 3 months after initial illness. The findings were;

"There is no acute intracranial hemorrhage, midline shift, or mass effect. There is no hydrocephalus. There is mild volume loss for age, more so on the right. There may be a small area of anterolateral right frontal encephalomalacia. The skull is intact. Mucosal thickening is seen inferiorly in the right frontal sinus as well as throughout right ethmoid air cells. The right sphenoid sinus is partially opacified. Mild mucosal thickening is seen in the left sphenoid sinus. The partially imaged maxillary sinuses do not show mucosal thickening. The mastoid air cells are clear. Debris is seen in both external auditory canals. No gross intraorbital abnormality is seen."

Since 2020, I have had 3 brain MRIs, all done with contrast.

The first brain MRI, done in early 2021 a month after my brain CT scan, showed "Partially empty sella turcica with mild CSF prominence at the optic nerves bilaterally, can be seen in the setting of idiopathic intracranial hypertension.".

The second brain MRI, done later that year, showed that same result as the first MRI, but now with "Scattered FLAIR hyperintensities nonspecific but most commonly related to chronic microvascular changes." as well.

The third brain MRI, done in 2023, didn't mention anything related to a partially empty sella, CSF buildup, FLAIR hyperintensities, or idiopathic intracranial hypertension, but instead just said "Mild volume loss in the right frontal middle and inferior gyrus most consistent with encephalomalacia. Following contrast administration, no abnormal foci of enhancement are detected. There is no evidence of acute infarct, hemorrhage, mass or mass effect. Incidental pineal cyst."

I had a cervical spine MRI done in late 2022 without contrast, The findings were;

Craniocervical Junction: Normal.

Osseous Structures: There is normal alignment and vertebral body stature. Marrow signal is normal.
Spinal Cord: Normal signal and morphology.

Disc levels:

C1/2: There is no significant arthritic change or stenosis.
C2/3: Normal disc space and facet joints without stenosis
C3/4: There is rightward eccentric disc osteophyte formation and uncovertebral spurring, mildly narrowing the right neural foramen.
C4/5: There is a left paracentral disc osteophyte which impinges on the left lateral recess and contributes to borderline left neural foraminal stenosis.
C5/6: There is broad-based disc bulging which slightly indents the ventral thecal sac, abutting the cervical cord and contributing to borderline spinal stenosis.
C6/7: There is mild broad-based disc bulging without significant spinal or neural foraminal stenosis.
C7/T1: Normal disc space and facet joints without stenosis

Paravertebral soft tissues: Normal.

I had a lumbar MRI done without contrast this year. The findings were;

FINDINGS:

Normal lumbar vertebral body height and alignment. No vertebral body marrow edema. Degenerative disc desiccation at L2-3 and L3-4, and at L5-S1. Normal conus termination, tip at L1-2.

Intervertebral disc space findings are as follows:

T12-L1: Trace right paracentral disc protrusion minimally indents ventral thecal sac without significant central or foraminal stenosis.
L1/2: No significant central or foraminal stenosis.
L2/3: No significant central or foraminal stenosis.
L3/4: Shallow disc protrusion minimally indents ventral thecal sac and there is minimal facet hypertrophy with minimal to moderate central canal narrowing. No significant foraminal stenosis.
L4/5: No significant central or foraminal stenosis.
L5/S1: Trace central disc protrusion without root impingement. No significant foraminal stenosis.

Paraspinal soft tissues and visualized bony pelvis: No acute abnormality.

I had a CT scan of my sinuses in 2021. The findings were;

FINDINGS: 

Frontal: Moderate mucosal thickening in caudal right frontal sinus. Clear left frontal sinus. 
Ethmoid: Mild mucosal thickening throughout right ethmoid air cells. Minor posterior left ethmoid mucosal thickening. 
Maxillary: Tiny retention cyst along floor of right maxillary sinus with additional tiny focus anteromedially. Clear left maxillary sinus. Clear ostiomeatal units. 
Sphenoid: Moderate mucosal thickening bilaterally, more so inferiorly. Nasal cavity: Mild nasal septal deviation to the right superiorly with slight deviation to the left inferiorly. 
Tympanomastoid: Clear. Narrowed porus acusticus bilaterally, more so on the left. Osseous thinning along superior margin of both superior semicircular canals. 
Orbits: Unremarkable. Intracranial:
Grossly unremarkable. 
IMPRESSION:  Diffuse overall mild paranasal sinus disease.

I have had testing for lupus, celiac, Sjogren's, thyroid disease, and vasculitis, which were all negative. I do not have diabetes. I had my ANA tested in 2022 which was 1:40, speckled pattern, and tested again this year, which was 1:80, speckled pattern. My CRP/ESR has been consistently quite high since first tested in 2022, but was blamed on my obesity, as it has always been high, and hovered around the same levels each time. I have seen two rheumatologists, one in 2022, and one just this year.

I had (what felt like a rushed) EMG/NCS done of my left arm by my second neurologist (the quacky one) in 2021 that was supposedly clean for any neuropathy. I had another one done this year by my current neurologist that felt much more professionally done that was also clean for neuropathy.

My dad was diagnosed with severe GBS about a year ago. His initial was caused by campylobacter, from undercooked chicken. He was on the ventilator, in the ICU for weeks, etc. He is doing well in his recovery, relearning how to walk. However, today, while preparing Thanksgiving dinner, I noticed my mom was being a little less careful than she should when it came to preparing the turkey. I cleaned up after her, but I’m in this state of panic that somehow a drop of raw turkey juice got somewhere that could infect him. I’m paranoid about my dad getting a campylobacter infection again, and then having a recurrence.

Has anyone had campylobacter food poisoning after their first diagnosis and NOT had a recurrence? How exactly does that work? How likely is it?

Any advice is greatly appreciated. Thank you!

Hi! First time posting. Wanted to share what I’ve experienced and see if anyone had any insight.

Was hospitalized twice last week of October first week of November. Has five days of severe diarrhea before hand then symptoms came on atypically…up right leg then right arm, especially bicep muscles (which I still cannot use AT ALL), then both thumbs and forearms, then severe back pain and pain and numbness down both legs. Double vision. My LP, which was done hours after symptoms first started was negative. They sent me home twice (with huge CSF leak from the LP but that’s another story). Made me wait a month for a follow up. I got sent home with GBS paperwork, but no diagnosis in my chart, because LP and mri were normal. Remember, they did this the same day I first had symptoms, which was 2days after the diarrhea)

I got slowly but steadily worse for three weeks, then I begged neuro follow up to see me sooner and they did. Still won’t say it’s GBS, though I use a wall or my husband to walk. Scheduled me nerve conduction studies at the end of FEBRUARY.

Happened to see my new GP on Monday…she’s a nurse practitioner. She was alarmed that there was no dx, w my symptoms being what they are, and immediately send out for a referral to Duke neuromuscular neurology, which is a center of excellence for GBS. Waiting on that process.

Neurology also gave me referral to physical therapy and the therapist was surprised that there was no diagnosis. I have low tone for deep reflexes, pain, inability to use muscle groups, weak legs and arms and hands. First session Tuesday, then home program. Doing even simple exercise, which are not even a warmup compared to what I used to do…exhausting.

I think my walking has gotten worse in the last five days. Now lying in bed with raging allodynia in both legs, moderate in arms, and even a bit on face and head. Was this from starting exercise?

Well anyway, hi! I know this group is full of people working their azzes off to just get back to regular life.

I want to apologized to any one I have may hurt I am Sorry i wasnt taking light or trying to do anything I am afraid I am again Sorry I want any of you to know if I can help in any way I will Thank you and again I am Sorry for my post

-Extreme muscle weakess, Includes facial, neck, shoulder, arms, hands, chest, intercostal, back, legs, feet. Worsens with use. Accordingly, very difficult to walk

-Heavy feeling in muscles, like wearing the lead vest at the dentist, but everywhere

-Numbness, pins & needles especially in feet, shins, arms, face

-Nerve-pain feeling especially in back, ribcage and extremities.

-Pain in spine and neck

• Difficulty breathing especially when chest and back muscles are most weak

-Tinnitus

This all followed Covid infection. I also have POTS/Dysautonomia which has been confirmed by doctors. These symptoms all started out with weakness almost a year ago but got continually worse. I am now completely disabled, can barely walk, feel half paralyzed. Clean EMG and brain MRI. I haven’t had a lumbar puncture. I’m awaiting a skin biopsy for small fiber neuropathy, but this goes so deep.

Im trying to advocate to my doctor that I need a lumbar puncture but he’s saying “this could all be POTS”. This is definitely not just POTS.

Does this sound familiar to anyone? Thank you so much for reading.

What was your experience like with this? What have you done to help? Any tips or just hearing about your experience with it is appreciated.

I got sick so fast (obviously), being immobilized became my new normal. I genuinely thought I would never be able to walk again (I should've gone to the hospital but didn't because of prior medical trauma, so I didn't know what was happening to my body for many months after I started getting better). I was in a wheelchair for months and had to be pushed around by my wife (then girlfriend). The pain was excruciating, the (incorrect, but fair assumption) knowledge that I wouldn't get better destroyes my mental health. I started referring to myself as a wheelchair user and it became a part of my identity because it affected every aspect of my life. I never was in therapy to process these feelings, but I wish I had.

Then I just,, started getting better. A year and a half later, I still use a rollator or wheelchair some days, but I can generally walk on my own. My pain is significantly more manageable. Which I am eternally grateful for obviously. But the emotional whiplash that came from that is so confusing. A massive part of my life that changed so quickly from mobile to immobile was suddenly reversing not quite as quickly, but still very fast compared to the expectation of permanence. I am diagnosed autistic, and already have massive issues with processing change (I think this kind of change would be crazy for anyone though). A community (wheelchair users) initially connected with now doesn't really apply to me anymore. Every aspect of my life isn't ruled by mobility issues, pain, or the full inability to do most things on my own, from sitting up to holding my phone to getting to the bathroom. I am able to go out and experience the world again. I am not in bed 24/7 anymore.

I never initially processed my feelings surrounding GBS. Now I don't even know how to process those because it's not something I even experience anymore, at least to the same degree. It feels like I missed my window of opportunity to process the pain, losing friends, being disabled so young (it happened when I was 21), loneliness, helplessness, being ignored and dehumanized in public due to being in the wheelchair. I heavily contemplated ending thing several times when I was in the thick of it. And now,, it's just, different?

It's been such an insane experience, especially with not having answers as to what was even happening for so long.

Does anyone else have the worst bladder known to mankind after getting sick? Like i got gbs after getting covid and it’s been 4 years and i cant sleep or walk a lot or go out have fun or sometime Talk because of how excruciating, agonising it is. Genuinely can’t sleep more than a couple hours and i still wake up a lot to go to the bathroom because my bladder feels So full and so painful like i can’t even describe the pain. I did every test there is they all said because of how damaged my nerves are. Does anyone relate to this and if so is there something that helped you with this even a little bit

tl;dr - any gift ideas for someone with recently diagnosed GBS that will be in the hospital/rehab for a decent amount of time?

Hi r/guillainbarre,

My dad (66M) has recently been diagnosed with GBS after a few weeks of gradually losing strength and mobility in his lower body to the point of needing a wheelchair. Fortunately, he is now being treated with IVIG and PT/OT, so hopefully improvements will be starting soon.

However, he is in the hospital for now and is likely to be discharged to an intensive physical therapy/rehab center for...however long is needed. We don't quite know what that looks like yet, but I imagine it will be weeks if not months.

This coincides with Christmas, and I would like to get him something that will help him handle the recovery period better - even if it's just passing the time - but I'm struggling with gift ideas. I know it's going to be hard for him, but I don't really know how to help with that.

For those of you who have experience with this, what would be something that helped you/your loved one through this whole process?

Hi there… My first post on Reddit. I was diagnosed the end of October. I was struggling very bad with balance and walking… Are ended up falling and breaking a shoulder. I had five rounds of. IVIG at the end of October. I went to rehab for two weeks also and got a lot of strength improvement there.

I’m curious if anybody has any input on healing time… I still have horrendous nerve pain and no sensation in my legs up to about my belly button. Does anybody have any advice or tricks/tips for the intense nerve pains? I am also curious when people got back to walking normal? I still have a very unsteady gait and feel scared to use my knees. I am independent transferred from wheelchair to bed/chair. All input and tips and tricks are welcome… Thank you everybody and I hope everybody is doing good.

26,Male,Non Smoker, 6ft 1, 88kg

so it all started off with being ill, migraines, coughing pheghm, wheezing and diarrhoea, red/sore eyes, sore ears, jaw tightness for 7 weeks i was then diagnosed with moraxella catharsis a bacterial infection, got given doxycycline now i have heavy/weak/sore legs and arms, blurrier vision, shortness of breath, twitching, stiffness, low energy, blurry vision when standing up, hand cramps, tingling, my right side also feels worse, exercise intolerance, had numb arm/face at one point, sore joints including knees, elbows, hips, ankle shaking, also had a red rash at one point and feel malaise everyday

I'm so happy there's a community for it!

Just wanted to say hi and wish for a speedy recovery for all!

last night i was lying in bed and felt like i suddenly had the worst restless leg syndrome ever, something i have never experienced before. It felt like i had the worst tingling inside my lower legs and gradually went up my legs. I just kept tryint to stretch them out, put pressure on them, anything to make the sensation stop but it wouldn't. Now today the sensation has moved into my back and into my arms. my limbs feel incredibly heavy and weak and I am just restless with the sensation in my body of the tingling at the same time. I have deep cramps in the muscles in my arms and back and just generally feel out of it. I can walk fine I just feel very heavy. I had surgery roughly 4.5 weeks ago. I dont recall being sick with anything recently but i did have surgery. I just dont know what to do. My husband is out of town and i dont want to go to the hospital and it be for nothing. I just cant take the tingling and weakness anymore now that its all over my body. My heart rate was also feeling elevated today but I have a history of that. I just feel like i want to crawl out of my own skin. I am so uncomfortable and weak.

Hi everyone.

Last Tuesday, I did a Pilates workout at home. After this, I began feeling pins and needles in my feet. On Wednesday, it had spread to my calves where they felt a bit numb, I did a hamstring workout with weights on this day. Thursday, it was the same except my thighs also felt numb and tingly - but I wasn’t sure if that was my hamstring workout making me sore. Then on Friday, it had spread to my lower abdomen and it was really uncomfortable, so I went to a walk in clinic to see a nurse. The nurse did some reflex tests, poked me with needles (I could feel the prickling, but it’s like a ‘weakened’ sensation compared to my hands and arms). He wasn’t sure what was the matter and mentioned the possibility of GBS, but he couldn’t be certain as I wasn’t displaying other symptoms. He wanted to send me to hospital to be checked and rang them, but they said no and told him to send me to A&E instead. I went to A&E and they checked my bloods and reflexes again before I saw a doctor. The doctor spoke to me and said my bloods were fine and he doesn’t believe it to be GBS and that I wasn’t ‘convincing’. He told me to go home and come back if symptoms were worse. On Saturday, it had not spread but was still numb, tingling and went cold occasionally. Sunday I began to experience some stiffness in my toe and knee joints but not pain. Today is the same and my knees feel like they could buckle in, standing for too long makes me feel heavy and causes greater tingling. My feet, legs and lower stomach feel dead. I tried walking around the garden for 10 minutes and it sort of relived me but then felt stiff again. I can do a lunge and bend my knee but there is a feeling of resistance and I can’t move as fast as usual, so going up and down the stairs takes me a little longer. I’m not sure if I should just carry on waiting it out to see if I get better. I spent 9 hours on Friday just to be told go home and so I’m hesitant to go back. I’m not sure what to do.

Hi all, bit of a weird one but thought I'd throw it out there in case anyone has had a similar experience or any answers.

My husband has been diagnosed with the AMAN variant of GBS has been on the ventilator for about three months now. He has a tracheostomy and he is now able to speak and eat through the vent weaning process. He can eat and speak for about 14 hours in the day, however when it is time to sleep he is put back onto pressure support on the ventilator.

The issue is that there is disagreement between his ICU care team as to how they should wean him off the night time vent. They tried a lower support for two nights but he had a lot of mucus so they switched him back to full pressure support. They keep going back and forth so even my husband finds it difficult to adjust and doesn't know what is causing more mucus to be produced than normal.

Does anyone have any idea as to:

• why his mucus has increased so much?
• what would be the best way forward to get him off the ventilator even at night time?
• any experiences that are similar?

By way of context, my husbands cough is getting stronger so he is able to cough and bring his mucus up however he isnt strong enough to expel the mucus entirely by himself.

I told the army I had gbs when I was younger and after discussion they decided to give it to me. I did some quick googling and it seems like I shouldn’t have been given this vaccine. Should I be worried? I had a mild case of gbs when I was 12 I’m 32 now. I believe I got GBS from the flu. It wasn’t from the flu shot. The children’s doctor at John Hopkins said I can still get the flu shot but every doctor I tell now still won’t give me one. I also had chicken pox was I was a kid.

Hello everyone! I am conducting research on how the delayed diagnosis of Celiac disease leads to the increased diagnosis of other autoimmune diseases for my Advanced Placement (AP) Research class at school. In order to conduct the necessary research on the topic and effectively write a research paper, I have created a short, simple survey with questions related to Celiac disease and other autoimmune diseases (such as Guillain-Barrè Syndrome). If possible, please take 5-10 minutes to fill out this survey in order to both benefit my research and the Celiac community.

Before the survey is completed, the attached consent form must be completed as well. All participants must be at least 18 years old, and it is preferred that the participant have Celiac disease. There are no other requirements for this survey, and it is in no way required, this is just to gather data for my class. This survey will be closed after November 28 so if able, please complete it by then. Participation is voluntary but highly encouraged and extremely appreciated.

Survey: https://forms.gle/m1g5cyfXbJoGRknFA

Major update. Last night I had a EMG after my neurologist was refusing to start IVIG and honestly didnt really believe my previous diagnosis and reversal history.

The EMG showed I have no nerves reacting and finally ended with a diagnosis of CIDP. I'll get a few doses here and then be able to get set up in a clinic outside of the hospital! Finally no more back and forth.

Hi all, my son tested positive for Flu A this Monday, this morning he woke up and said his legs feel tingly. All day I’ve been monitoring him and he says it goes away, then later in the day he says they are tingly again. Then tonight laying down for bed he mentions his legs feel so cold. Do these sound like beginning signs of bgs?

When my wife went out for her bachelorette party, they played a game asking her questions about me. One of them was "What's his greatest fear?"

She said "drowning."

One of the bachelorettes put "Creaky Stairs"

I'm having my 5th flare up to which I came very earlt to avoid damaging the progress ive made over the last 6 months. The neurologist is refusing to start IVIG and says I don't meet criteria. When I got here I could bareley feel my toes now it's spreading to my feet. I was basically forced into another spinal tap which would be my 8th in a year and a half. Even the surgeon wasn't onboard.

I feel like unless I'm completely paralyzed no one is taking me seriously and now docs want to act like I haven't been receiving treatment for this for over a freaking year. I don't know what to do.

I am trying to re-word this from my post in my Bell's Palsy group. (BP)

Has anyone whose only symptom was Bell's Palsy had a Guillain Barre Symptom?

I had someone mention it to me as a possibility to get checked out for. My original onset was WEIRD. I felt sooo much tingling before the palsy. I kept felling like something was wrong, so I kept checking the mirror. Here's the kicker, the tingling was on the OPPOSITE side of my face. I was at the ER with antivirals and steroids within 30 minutes of the palsy starting.

I have tingling in one of my thighs as well.

I keep reading the GB is usually 2 sided not 1 sided. BUT I HAD 2 SIDED symptoms.

I'm 7 months into this journey (BP). I want to know WHY!!!! I know I probably never will. I spent just over 2 months

My only wins so far are that my cheek works (3 months in) and my eyelid closes (5 months in).

If you've experienced this, how did you go about getting tested?

Hi all, my partner recently was diagnosed with GBS. While it is stressful and we have had to make adjustments, they are doing absolutely amazing and are staying tough. Christmas is coming up and I'm looking for gifts. I'm looking for ideas of any items that have helped you all or you would recommend. Also would love to take them on a vacation but need to make sure it's accessible. I'm thinking a cruise could be a good vacation but would love any and all recommendations for good vacations or gifts that would help. Thank you in advance!