My Beautiful Wife Beth was first diagnosed with Guillian Barre Syndrome back in early October 2018 and is currently in a nursing home.... She has improved drastically during this time but still can't walk... This has been one of the hardest things we've ever been through in our 13 years together.... There were several times in the beginning that I thought I was going to lose her but she has shown so much strength and refuses to give up... I have been with her since the beginning and I will be there with her until it's over with... It's especially hard when it happens to someone you love & it's one of the worst things I've ever seen and I went through brain surgery in 2012....💔 54 years old when I first heard of this and wish I didn't have to find out the way I did....
@@lindajenkins5209 I was diagnosed with Miller Fisher Syndrome a GBS variant . The first symptom was inability to walk numbness in my mouth and had double vision. Anything that I hold just fell off my hands. The doctor suspected at first that it was a stroke, he gave me immunoglobulin for 5 nights through iv. After 3 months I fully recovered. That was 11 years ago but now I'm having residue from that because i have unexplained fatigue and tingling on my fingers. I was 58 yrs old then.
@@lindajenkins5209 I am 25 years old and diagnosed with this right now. I am in rehabilitation center for nearly three month. At the beginning I couldn’t do anything alone and needed help in everything that I had or need to do. Now I can walk and stand, do things and need help to get up from regular chair, can’t still got up on stairs and need help in the toilet… easy easy but on the right way I move for recovery
I got GBS at 15 in Dec 2017. Such a terrible experience. Nobody believed me, not even the doctors when I told them I was getting weak. Then after my 5th visit they life slighted me to Kansas City because I was completely paralyzed. I had to wear an oxygen mask for a week bc I also had pneumonia. I had to learn to walk and talk again. I definitely don’t wish it upon anyone.. the worst pain to ever go through. Recovering is depressing, but yes god is with all us and he saved my life.
So sorry you went through this! Why didn’t they believe you? I don’t understand this! had a patient admit for sacral wound and sepsis and was unable to walk because of GB a few years ago… patient can feel their legs but not move them and told me doctors didn’t believe him at first… and now it’s in his history in the chart but he still encounters doctors who don’t believe him… we learn about this in nursing school but doctors are just ignoring it?
My daughter was struck suddenly by GBS on the evening of August 17th, 2024. She is 20 years old and has been in the hospital since. She is essentially paralyzed from the hips down, only able to move her toes and rotate her ankles. Prior to the event she was an active, normal young lady, a college cheer leader at CSU.
I suffered from the illness in 2018 and in 2022. It stole my life, time and happiness from me but I still fight everyday with fatigue and occasional body pains. It started in my face and eyes with blurred vision and dizziness, doctors misdiagnosed me in the er and discharged me, I left the er room and fell in the er hallway, 24 hours later I was in ICU fully paralyzed. I was awake but scared cause no one knew what was happening until they confirmed with a lumbar puncture that I had a protein for GBS. Godbless every doctor that day, they ran and saved my life and because of them I am able to see my babies finish growing. I am now 35 and try to limit my stress levels, eat a moderate diet and do light exercise. I’m happy to say I am a survivor.
The very best to you. It’s a fight that unfortunately is up to you to fight alone so often. Be careful in your fight and be kind to yourself. If you do a good enough job you will watch your children grow. You sound like you have it under control. Good luck with everything.
I got this after getting the flu vaccine in 2018. It was awful! Thank GOD I am better, but I have still have painful peripheral neuropathy. According to my neurologist, it is most likely permanent. 😞 And while I hate it happened and it certainly changed my life, I am very thankful I recovered!!! 🙏
It's strange because now I'm hearing that people who have been vaccinated with you know what have gotten this condition, I'll have to look more into this..
So very happy to know you are better!!! Because of my brother's GBS tragedy, I'm now not going to get any vaccine!! Watching him suffer those 8 months in the hospital was enough to scare me!!
The exact same thing happened to me after a flu vaccine 5 years ago. I still have chronic sensory neuropathy CIDP and still take IVIG monthly. I’m glad you recovered. Did you open a case with the federal vaccine compensation program? Mine is still in process.
@@jankelsey9738 Hi Jan! My brother did file a claim with the Government, had to provide all his documentsfrom the 3 different hospitals/rehab facility he was in. His lawyer representing him said he's not seen a case as bad as my brothers. It's been in review for 3 yrs now, seriously 😐! They finally came back with a settlement amount, which was ridiculously lower than what he should receive. We are giving another final push back to try and get at least a bit more . It's very maddening!! He still has GBS in the bottom part of his legs & they say he'll always have that.
Just watched a video of a mother of a newborn who completely overcame this. It was a long & hard road she spent 126 days in the hospital total. Went from being paralyzed to walking again. Great story.
Yes! Are they are saying the J&J vaccine increases susceptibility to the bacteria that causes GBS? Or does the J&J vaccine induce GBS all by itself? I got the Pfizer vaccine that will probably have issues too. J&J only has 21.4M shots with 12.7 used. The vaccination rate has gone down so low it's depressing.
@@johnconway4389 LOL nah whats depressing is the unvaccinated are going to have to stay away from the vaccinated to avoid getting sick from yall LOL yall are going to carry every disease known to man soon.
My sister who was 16 in 1977 passed away from complication's of GBS, she got it from the swine flu shot that was given in school that year. She ended up paralyzed from head to toe from it, got gangrene in her aorta arch from using a too large of a tracheotomy tube and ended up having 17 open heart surgeries in 3 months, she actually began to get better from the GBS like getting feeling back and sitting up and starting to breath on her own and even ate a few bites of food after 3 months of being paralyzed, but sadly she died of a brain aneurysm. This all happened at the Mayo Clinic in Rochester, Mn. They had such an amazing team of Dr.'s there. We believe she would have passed sooner than she did if she would have stayed at our small local hospital in Iowa. It is amazing how things have changed over the last 45 years how it is treated!! RIP my sweet sister! You are so loved!! Miss you so much!!
@@sueburt1757 actually, there were two major swine flu vaccine rollouts-one in 1976 and one in 2009. The 1976 vaccine was rolled out after a sudden emergence of swine flu at Fort Dix. This is according to a Medical News Today article. And according to the CDC, the vaccine caused a slightly increased risk of GBS.
I m a gullian barre sydrone patient in 22nd 2016 i collasped now 5 years i still no balance bad foot drop claw fingers Pls pray for me i want to normal
Dear Lord I pray that you heal this person and that you strengthen them and support them physically mentally and spiritually. Glory be to the highest the king of all Kings hallelujah. Amen
2001 got guillain-barre and it hit my respiratory, where I couldn't walk talk or see for 3 years. Had two neurologist that was clueless. The pain I had lasted all through the years and continue, but not as bad. I aspirated all my drink and food. My mylon sheath was affected so bad, the pain! I saw 4 yellow lines a two white lines when I drove down the road. We really have medical idiots out there. I should be dead.
@@Rmveber my treatment was heat. I took many hot baths and had a rice pack wrapped around my right arm seemed like forever. The pain was so bad I was in tears constantly. I did stretches everyday and was on vitamins that my chiropractor put me on. I went to the chiropractor every 2 to 3 weeks. I was on steroids and aspirating pills for 3 years. If I don't go to the chiropractor every 4 weeks it gets harder to breathe. I took myself off of the steroid and the aspirating pills once I was able to eat and drink normally. I still have nerve pain in my right arm and sometimes I still use the rice pack that I made. You put the rice pack in the microwave.
I was diagnosed around Christmas just gone after three days in hospital. It was scary. I had Covid, which led to sciatica. The sciatic pain abated, but i woke to find I could barely walk. It's five weeks later and I've made very little progress this far. I'm getting around on crutches and try to stay positive. The prognosis for most of us is quite good but requires patience. I'm trying to stay active. I shop using a trolley as a walker and the stairs to my second floor flat are a challenge and a workout. Although debilitating and extremely frustrating, my heart goes out to those who have it much worse than I do. I've cancelled any life plans I had for now. I'm a carpenter by trade, but now have elderly people scrambling to hold doors open for me. It's humbling,to say the least.
Is there any community group on social media or some messanger applications of people who had this disease in the past or still have it?? I think it would be good to share experiences there
did u suddenly stop walking after covid? i have covid and my hands and feet feel very numb in the extremeities namely my left hand has some strange numbness. hope you make a full recovery, feels like not many people talk about these symptoms with covid
Thats crazy, i had almost the same thing happen to me too around the same time after getting covid. Its been 5 months and I'm still recovering. Im glad you are doing better. The chronic pain out of nowhere is quite a mental challenge too. I hope youre alright
I had it when I was 21. One of the lucky ones, it didn't shut down my heart a s lungs.. I was told not to have flu vaccines as I could have a relapse.. I've never had a flu vaccine in my life and for that matter, I couldn't tell you when I've had the flu.. Meanwhile I've been told by many they get the flu shot but end up getting the flu... lol 🤔🤔
Jeff, I've never had a flu shot in my life either, and as far I know, have never had "the flu". It appears the jury is still out on the safety and efficacy of some vaccinations. My thinking is, don't be messing with your immune system if you can avoid doing so. My own brother will not let me visit him because I haven't had the COVID vaccine shot. This, the same man I visited in the hospital with Epstein-Barr and he never once made an issue about passing on HIS infection, while I was in his hospital room. Go figure. All most of these videos prove is that the "scientists" are mostly guessing and jumping to their own conclusions. And that Fauci is just an over-paid fraud in my opinion. Makes more money than the president of the US and never leaves his administrative desk to step foot in the actual laboratories ... just another political bureaucrat with ties to the pharmaceutical industry.
@@tabitham1057 I was talking about the last part where they said they’d never gotten the flu despite not having a flu shot but they know people who’ve had the shot and still got the flu. It kinda sounds like they’re saying vaccines don’t work
Hi shashikant, My mother also got an acute GBS four days back. She is receiving her IVIG dose and 4 days are completed as of today. Can you tell me how much time it will take to recover? Also of you can suggest some good practices otr medicines which were used in treatment.
I got this just before my 9th birthday. It started when I was at recess in school playing tag and I noticed I couldn’t run as fast as I normally could but didn’t think anything of it. My mom and I were scheduled to go on a mini vacation that weekend a few hours away, and the first day into our trip we went on a walk down a long trail to see petroglyphs. At the end of the trail I collapsed and could no longer stand up or walk, so she had to carry me all the way back to the car and rushed me to the hospital. I’ll never forget the look on her face, or the doctors when he said he believed he knew what was going on. Sticks with me. I recovered a couple of weeks later but had to undergo physical therapy for months and still have some longterm side effects but they are manageable and I can walk just fine. My longterm symptoms are mostly related to fatigue but with a healthy diet and exercise it seems to stay in check
CDC study shows risk of Guillain-Barré syndrome elevated after Ad.26.COV2.S COVID vaccination………. Did you take the vaccine (covid shot)????? This is what lead me here a news article.
@@khiyaduo This happened to my daughter @ 10yrs old after the HPV shot. She was paralyzed from the neck down. Was in ICU for several months and Rehab 7 months. She had to relearn everything again. There are many shots and vaccines that we were advised not to take. Covid-19 one of them!
I have GBS, after a flu vaccine. My pain didn’t go away until I fasted for 4 days. Now, anytime it flares up, I fast. Fasting is the only thing that has ever worked for me.
Thats what works for me with this. I'm 28, and had a flare up once when I was in the 10th grade. Still, 13 years later, watching what I eat, portion control, fasting, lots of water and a mindfulness of listening to my body on cravings and turning most of those cravings down has worked for me and i haven't had an issue since. Once I feel things in my feet and twitches in my face, I know I'm missing something or I've eaten something I didn't need. Very mindful of my vitamins and lack of is always the best to keep this under control. I've noticed I crave a strong Keto diet and I take vitamin C and D to manage it. Good luck and I hope you're still managing this.
My dear darling daddy had this in the 1960's. Was in hospital for three months. This was so frightening to look at. By the grace of God Almighty and most wonderful and dedicated doctors, he walked out of the hospital. God bless all those loving and dedicated doctors and nursing staff who attended to him.
My son was diagnosed with GBS just before his 2nd birthday. He quickly recovered through plasmapheresis over the course of a 10 day stay in the hospital. He had to learn to walk and talk again, but quickly recovered. This was in the Summer of 1990 and thankfully he has no residual effects.
My brother had it way back in late 70's. At that time only about 11 people had been diagnosed. But , his case started in his head , a numb tongue within three days he was on ventilator and in ICU for almost three months . Luckily he was young and recovered almost completely within about six months . I remember his nerves coming back to life excruciating pain. It was impossible to keep him down and even before got over the "foot drop" he started playing baseball again. He recovered completely.
I got this due to Covid 19 as I spent two months in a coma and I had all the symptoms. My arm on my left side was paralyzed and had to learn to walk again. I'm still recovering and trying to get stronger.
@@beachinhonolulu5136 have they recovered completely? I am going on a year and my left arm is still paralyzed and I have foot drop and still get tired after walking for a while.
@@raydiokilla honestly her recovery is remarkable. She was in a coma for almost a year and had to relearn how to walk etc. she still gets tired easy and can’t stand too long but she can walk and talk and eat. It’s amazing she is so young too only 27. I wish you luck on your healing journey
This is more than spooky how RU-vid recommend this to me when I just had a patient few days ago with suspected GBS. Though didn’t know much about this condition, guess someone wants me to learn more about it 👩🏾💻📝
Yes I was just talking about gB the other day and it just came thru my feed as well. Spooky. Nothing private but worse that you were with a patient. But then HIPPA no longer matters you know...unfortunatley. theres no privacy anymore
My daughter had this when she was thirteen. She only had a little cold a few weeks before this devastating condition. But had recently received some vaccinations. She’s considered fully recovered. But she is not the same. It was extremely painful. Completely debilitating. In hospital almost two months. Being treated and then learning to do everything again like a baby. Walking, feeding herself, speaking, brushing her hair etc.
@@TauntEh I'm very curious to know time period took for you to recover such as walking etc.. One of My loved one encountered Guillaun Barre right after few hours when she took shot of vaccine. She can talk perfectly fine, move head but legs, Arms are not moving.. I'd love to hear bit more from you so we can also takes those precautions for her .
@@valuechain4710 another thing to keep in mind is age, i got out of hospital in 6 weeks i’m not sure if that’s quicker than average or not but I was 20 when I had it the worst, older people can take longer to recover but honestly if the person is dedicated to getting better every day they will be fine :)
I wanted to learn more after recently hearing that some doctors believe Franklin Delano Roosevelt had Guillain Barre Syndrome instead of Polio as originally believed.
Didnt know that!! Wow will research. Well my dad had GB after the flu shot and it was a very difficult time for my family. And a client who had disappeared for almost a year had guilliam barre. His wife came into the salon to book an appt and said it's been a horrible year. She Explained that he also got GB from flu shot per his dr. I know it's rare that it could occur "that way" but it's worth knowing about.
Stay away from the 💉💉💉 from hades… heart attacks, strokes, shingles, myocarditis, CANCERS, ALS, etc… “another day, another clot…” 😢🙏🏽🙏🏽🙏🏽🤦🏽♀️🤦🏽♀️🤦🏽♀️
You are literally helping me get through my finals. I love your content and I visit your website daily. Thank you so much for everything you do!!!! - RN student
I've had GBS several times in my life.... unfortunately. Oddly enough, I'm in a hospital like facility with GBS right now!! I've been sick for almost 3 years...I have breathing tube called a trache tube that's inserted into my trachea through a hole in my neck..I also have asthma!! So that's how I take my asthma breathing treatments as well....the scariest part of all, in my eyes, is that I've been out of my mind for that WHOLE time!! I just got my mind back ALL the way, TODAY!! I did have what I thought were just bad dreams about being in a hospital... but then I realized that I couldn't wake up from these "dreams". That's when it hit me... something wasn't right!! Come to find out, I WAS RIGHT about this situation NOT being just a bad, terrible dream!! THIS is real... I could've died!! My family told me that I stopped BREATHING at one point...clearly they were able to bring me back, but I just can't believe this craziness actually happened to me, to my family, AGAIN.... This is my ACTUAL FIRST DAY of full consciousness...or as I seem to be calling it, (based off of reading my text messages that I have between me and my family) I'm back in "My Right Mind"!! This is so freakin' crazy to me!! This is definitely NOT the position that I wanna be in right now, but at least I'm ALIVE and back in my MIND, to be able to say that!! I just want this mess to be over and done with and I want to FINALLY be able to go home and get MY LIFE back!!! Normally I don't put myself out there for anybody to "see"... but I figured, "Why not?!? I might as well".. so here I am... this is ME!! Hopefully I've been able to help SOMEBODY, SOMEHOW!!! Hopefully I've been able to help MYSELF somehow.... thanks for letting share my story with y'all. Hopefully I've been able to help someone else out there that's going through some tough or crazy times!! Whatever you do, don't get discouraged or depressed!! TRY to keep your head up and stay as positive as you possibly can!! Even if you have to fake it!! It may not seem like it and it may not be clear right NOW, but it WILL get better!! I'm telling myself this as well... this is for ANYONE that needs to hear this!! God bless you and stay safe out there!!! Amen AMEN 🙏🏽😇🙏🏽!!!
Thanks for your comment. Ive been having an insane time dealing with Pneumonia from Covid 19. With the Pneumonia, I feel so damn weak, like ive never felt in my whole life, and also makes it really hard to get any sleep at all especially with having asthma. I was looking at this video because ive been having weakness in my hands and muscles.....
Just lost my friend to Guillain-Barre. He leaves behind a 2 year old son and a wife. Devastating and shocking. All happened with in a week. Rest in peace my friend.
I'm waiting to be diagnosed. My family doctor thinks I have the beginning stages of MS. One neurologist said he thought it was sensory neuropathy and wanted to give me medications that I turned down. I'm not diabetic. I don't smoke or use alcohol. I'm seeing a different neurologist now. Next week I'll do a nerve conductive test. Depending on what the results are he said I may need a spinal tap. I have lost some of my reflexes in my knees. My MRI results showed some flares that were called white matter disease. This Guillain-Barrr'e was also brought up. So I'm still going through symptoms that started awhile back. The fatigue started in 2017 and the doctor thought it was shift work disorder. The fatigue is getting worse. Pins/needles and numbness in my hands and feet. My lips have a buzzing feeling and have moved on their on for like a second. I get twitches off and on in my face. But no one can see the twitches. My right thumb has moved in the past by itself. My right side has been effected the most. But I have symptoms on both sides. I can park my car and sometimes it feels like the car is still moving. My balance is off sometimes but I haven't fallen. It's one thing to have to deal with a health issue. But adding the fear of not being able to keep your job is awful. I can't see myself not being able to support myself. I use to be a six mile runner and now just being out in the heat wears me out. My legs feel like my shoes are weighted down. It's like everything you are going through is invisible to others while you are hurting in front of everyone. My voice changed a year ago. First I thought it was allergies.I take medication for my thyroid. I've been to see different specialist and now it's in a neurologist hands to tell me what is going on.
Have you recently have the Covid vaccine? This has caused very similarly symptoms in me aswell as lots of other people. I am 33 years old and 3 days after my third vaccine I developed symptoms like yours.
Do not inject the MRI gadolinium dye..its toxic and causes pain and serious health problems. MRI Gadolinium Toxicity Support Group online. No contrast dye!
My father had guillian barre after the flu shot in the 90s. He was in the hospital for a while and eventually recover ed. I also spent time in the hospital with a woman who had Gilliam barre. It was horrible. We shared a room and she was paralyzed, she could only whisper so i had to call nurses for her, she lost control of everything, she was very young. I was paralyzed on my left side but I felt worse for her! I hope she is ok now. I pray🙏
@dystopian21 I'm very curious to know time period took for your father to recover such as walking etc.. One of My loved one encountered Guillaun Barre right after few hours when she took shot of vaccine. She can talk perfectly fine, move head but legs, Arms are not moving.. I'd love to hear bit more from you so we can also takes those precautions for her .
@@valuechain4710 - a friend of my daughter's stepfather took the HPV vaccine, and contracted Guillain-Barre and died almost 3 months later. I really wish they would make vaccines hypoallergenic so they are safe for everyone!!
@@lisarice4402 I'm so sorry to hear that. My loved one cured in 2 weeks perfect condition.. Actually under menstrual cycle taken injection 💉 caused her head below body motionless.. she recovered miraclelssy. Her early symptoms shows GPS syndrome but after 4days she slowly begin to move hands, legs
Suddenly, since January 2021 we need to start understanding lots of strange and rare conditions, like this one. Anyway never mind, jibbiddy jabbiddy. Oh yes! Did you know even very young kids can have strokes and heart attacks, welcome to the new normal
My brother had this when he was only 6. It was so bad in the beginning. He was diagnosed in august 2020 and was paralyzed and needed a tracheostomy. Thankfully he got home just before christmas. He still struggles physically, he can’t run like other kids and isn’t as flexible. I’m so grateful he got through GBS as such a young boy❤
My ex wife’s younger sister was struck down with this…back around 1982ish…she almost died several times but thanks to superb medical care she survived 🤷♂️…love to all 😘
I was diagnosed with Guillain-Barre` Syndrome on May 24th 2022. I just got out of the hospital after having IVIG treatments. I was lucky that it was caught early but I am going to have a long recovery as I also have Ehlers-Danlos Syndrome. O'Joyous times.
I think I got GBS from the stupid Covid booster shot. Been a week now, getting harder to eat but I can still walk. Double vision and numbness is quite annoying though.
My experience with it was pretty bad but I was lucky that all the symptoms subsided after only one month. Compared to your experience, it's no where near as bad.
My experience with it was pretty bad but I was lucky that all the symptoms subsided after only one month. Compared to your experience, it's no where near as bad.
I am right now at the hospital and I have all the symptoms for 5days now. The doctors still have not confirmed the diagnosis since my bone marrow test was fine, also I can walk and my weakness is not that bad. But I still feel numbness in my limbs and I’m so scared reading these comments 😢😢😢
How are you now? What happened? I had a flu last week and I have weird numbness in my calves that increases up to my thighs after prolonged sitting, but I can walk
@@rewindandrestart they said I don’t have the disease it seems that it was post Covid . I was prescribed antidepressants and my numbness went away. The psychiatrist said lots of her patients had this after Covid
This hits home. Remember a close family member aflicted with this syndrome. It is quite bizarre. One day you are walking and next day you are paralyzed. No explanation, no obvious signs. just bed ridden. I am glad that it resolves on its own but during those times you are confused and highly stressed out. You honestly don't know which way is up and that is for the family member. Its much worse for the patient.
I was diagnosed with small bowel cancer last year .I am on chemotherapy after having half my bowel removed .The chemo can cause similar symptoms to GB .I have numbness in my toes and fingers they are so weak i cannot open any packaging or do up buttons or press studs on clothing etc .Even cant get the cream out of the tube the McMillan nurses gave me to use on my feet and toes .I was told to take Vit B6 perodoxine hydrochloride .
How are you doing now? I hope you are feeling better Kathryn. If possible plz search Metaphysical Anatomy channel on youtube and Listen to Evette Rose plz. I wish you healing and good luck 🙏🙏.
I got GBS in 1997. Still can’t walk without elbow crutches and have no balance. It really has destroyed my life as I knew it. If you get it bad it has unbelievable effects on your body.
@@mohitsrivastava3381 not taking treatment now. Still do my own physio. Just a really difficult situation. Should have said I use elbow crutches to get around. I live in Melbourne, Australia so had my initial treatment in the local hospital.
I was admitted into an Intensive care unit with what they called COVID-19. Intimated after 5 days. On the ventilator for 21 days. When I woke I couldn't move my arms and legs. I couldn't even turn myself in bed. That lasted another 26 days in an critical care unit . I was moves from there to an Acute Rehab Unit for another 26 days to relearn how to walk and use my arms. How to turn myself...etc. Is it possible they misdiagnosed my ailment just to get the bonus money from the government as a covid patient?
Guillain-Barré Syndrome happened to me when I couldn't stand up for all of a sudden, i tried to get up but no matter what I couldn't get up, I can't remember anything after but my mom helping me get up, after a while we've gotten to the hospital and after a while I was moved to a new hospital, My dad was always with me and my sibling and mom were at home, I didn't know what was going on when I was going to the hospital. It was so scary. Luckly I was treated and I have been good ever since I've left the hospital.
My gramma got this after her very first flu shot also, she was in her early 80s at the time and going into a retirement home where they made her get the shot she never recovered and ended up in a nursing home!
I developed Guillain-Barre after a mmr vaccine. I was told if I didn't get it,I wouldn't be put on the schedule. I Received the Vax March 23 March 24th I was swollen with aches and pain. I'm ferious!
I was diagnosed in 2017, ventilator, plasmapheresis, weeks in hospital, home in a wheelchair. I walk with bilateral afos and a cane. My new neurologist just told me in my 15min visit, that I never had gbs because at 41yrs old I would have been fully recovered at 3 MONTHS!!!! Gee, thanks doc. (I think he bought his PhD)
I was diagnosed with Guillian Barre in 2004. I was first told that maybe my pants were too tight when I went to the ER because I couldn't walk... 3 days later I was almost completely paralyzed and progressed to my throat.. and inability to swallow. I was given 2 vials a day of IVIG for 5 days and had months of physical therapy. At the time doctors knew little about the syndrome so they predicted that I would not be able to live my life without assistance for the rest of my life, I was able to recover 90% of my mobility back. I have been very fortunate to have regained what I had lost.. I am curious though as to how many people were diagnosed with GBS and then diagnosed with another auto immune diseases later. for me 2004 GBS then 2009 Diagnosed with Lupus SLE, Sjogrens, And RA.
I got GB in 1996 back when very little was known. I went to ER and was sent home only to get worse and present with facial dropping, paralysis. Since I've had a 3 part iskemic stroke, lupus anticoagulant disorder, fibromyalgia chronic, campylobacter gastro infection, and this year severe vascular disease (PAD). I live with chronic pain and state of constant flu like state. I have 2 good days per week. Meditation and Tai chi helps, massages/soft tissue, low stress, and no meat at all diet, no fried foods, low sugar and salt. Mentally, I'm stronger than ever as I take one day at a time. I have adopted an open mind to being patient with myself. I do fun things like walk short distance on beach 🏖️, listen to soothing music, physical therapy periodically, ASMR helps, and rest when tired. Sending you my very best, positive energy. Living in the moment each day 🙏😇
thank god i recover in that syndrome i didn't know what that means when the doctor said i have that syndrome i have no reaction cause i don't really know that type of syndrome but thank god i recover and i couldn't even walk when i have that but now I'm fully recover and can walk again
I had gbs when I was just 2 years old and thankfully recovered but came back just this Jan 2022 and I'm now 14 and I'm still at the hospital as I'm writing this comment currently recovering in rehab
Doctors in Germany could not diagnose me till now and im researching desperately to find such a correct video. I don’t know if Covid vaccines could have caused this issue or not
Our 29 year old son has been dealing with this since 8/2021. It's been 8 months now and he still can't walk and can barely use his hands. He's been in continuous therapy since 9/2021 and although he is getting better, he's a long way from walking again. His GBS came on very quickly. He was literally walking at the store at 9pm, by 12:30am he noticed he was stumbling a great deal and by 3:30am, he was paralyzed from the chest down. He was very lucky we got him in to the ER so quickly. The doctor said his damage was extensive with damage to the protective layer around the nerves and to the nerves too. They started him on an IVIg and when that didn't help they did the plasma dialysis, but with no real change. Has anyone else had a quick onset like that? I've not talked to anyone with an onset that took place over hours; has anyone on here experienced this? If so, what was your prognosis? I'm just praying he will get back some resemblance of his life before.
Mine took like 2 days for my hole body to paralyze I had it when I was 15 I’m 34 now and still have some aftermath your son will need a lot of support mentally and physically don’t let him down cheer him up on his therapy!!!!!
My father got it 10 years ago. A week prior he had a stomach flu. He woke up in the morning and suddenly could move his entire body. He could only move his head. There were no other symptoms before.
My mother got GBS exactly 10 weeks ago... she used to not move at all but now she is only moving her head, even though she's not talking, it makes me happy that she's making progress.
@@kavyamotapothula7393 She’s on her way. Unfortunately this takes a while. But she’s been able to talk for about 3 or 4 months and she just started eating soft food a few days ago. I hope your brother gets better, truly sorry.
I am right now at the hospital and I have all the symptoms for 5days now. The doctors still have not confirmed the diagnosis since my bone marrow test was fine, also I can walk and my weakness is not that bad. But I still feel numbness in my limbs and I’m so scared reading these comments 😢😢😢
I had this, this year, after campylobacter and dysentery which also caused critically low phosphate. My speech is still affected when I’m tired. I get tired a lot. I still braved a trip to India (thanks to the pandemic my marriage was cancelled repeatedly for 1.5 years so I had to go there to marry my fiancé or we’d have prolonged our separation) … it would have cost more for him to come to the U.K. for us to marry … and then I caught another stomach infection in India - but I’ve been ok. No more nervous system problems … Just extreme fatigue. Now I’m working 6-7 days a week to get my husband over here - fast. We lost a lot of money in the past 1.5 years due to repeatedly trying to get together and failed plans so I now need to work overtime to help cover costs (which we are paying together but it’s a lot of money) otherwise I’m potentially waiting another 12 months to be reunited with my husband. So I’m killing myself with work when I don’t feel well enough to, just so I can have my husband with me. Only then can I reduce my hours down to acceptable levels to help me recover. It’s extremely unfair what we have to keep going through. Such a battle.
I once nursed a 3- 4 year old child with GBS in 1982. He was diagnosed at age of 2. He was on positive pressure ventilator and hospitalized on an acute paediatric ward since then. All his development was affected.He was paralysed from neck downwards, his body didn't grow in size except his head. His speech not affected, could talk v.well, needed 24/7 nursing care. When he turned 4, we tried to wean him off the ventilator with support of an ambu bag, we trained his carer and parents how to care for him when he was finally allowed to have home leave. The time when I left my post, he managed to have short home leave for the weekend. Always wondering whether he is still alive today, that's the only and first GBS I nursed. This certainly was a sad experience to share. Medicine has moved on since then, prognosis probably much better these days.
Sad to say they can diagnose GBS and give the transfusions mentioned, the Neurologist was great and her Therapists terrific, 2 years later my wife is still hoping to walk again without her walker and for more that a few minutes. Thank you for your service as a nurse, good nurses are hard to find in 2022.
@@charlesdavis7461 Thank you for your appreciation of our nursing service. I can reassure you there are still plenty of good nurses around in 2022 and in future. Keep up the good work with your wife. There is always hope!
This is a great explanation of GBS. I can tell you from personal experience that a lot has been done re treatment since 1983, when I had GBS. I was hospitalized for 2-1/2 months in NYU and Rusk Institute and treated with steroid therapy back then. The steroids caused issues with my bones and I have avascular necrosis of both hips and shoulders, though I underwent a complete replacement of my left hip in 2010
i contracted GBS in 1999 and became quadruplegic,i have partially recovered but now diagnosed as an incomplete quadruplegic but still hete after 23 years aged 71, i was given a process called plasmapharesis several times a week to seperate the white blood cells from the red then replace white cells with plasma, its not fun, wishing all with this disease the very best
I got GBS in 2019 after a pneumonia shot one week later. I have a lot of problems with my feet and weakness in my legs I walk with a limp. My Dr would like me to get another treatment of IGIV BUT CAN'T AFFORD IT
My husband was gbs survivor 1 year from now and miller fisher syndrome, he recovered because of ivig treatment, now he's back to work, but sometimes he felt numbness in his face, and fatigue. Is it normal?
Thanks for this video. I like the way you spoke gently and clearly, easy to understand what you said. I've never heard of GBS until today, I read an article that said some people in the UK, Australia and India got GBS after taking the vaxx, so I searched for what kind of disease it is, and the symptoms. Well done.
Any vaccination has risks because there is a very small minority who could have a reaction but so does not taking it, where the risk is far greater so don’t let that put you off vaccines, without them, polio etc would be rampant. Watch a video on the effects of polio.
Concise and helpful video! But at some points I felt I was guessing (allbeit "likely" correctly?) as to what you were saying, because: 1. You pronounce "guillain-barré" differently than it shows online. Maybe yours is the British pronunciation, but I could not find it online (despite finding British pronunciations for other conditions or body parts), and that was distracting. 2. You say that the antibodies created by our B cells for the antigens on the causative agents "match" the proteins on the nerve cells ... but I think you mean our antibodies against the invader's antigen (you listed three antigens) "attack" those nerve cells because the nerve cells' structures (proteins) match the "protein" on the original invader for which our body's B cells made the antibodies in the first place. That's a mouthful, but I think it's what you meant? Is my guess correct? 3. Then you refer to "symmetrical effect," but at that point your illustrations at first depict a unilateral effect (to leg and face.) All of this has made me worry if I was correctly guessing what you meant, and whether I might or might not be correctly guessing at what you meant in another video that you put out. Imo, your video is PROBABLY VERY VERY valuable, but I would like to know if I am guessing correctly on the points I referenced.
Hello Thank you for your presentation. I Have two questions : 1/ Do you know a specialist in France that I could consult ? 2/ Could you tell me which soft-tool did you use to make your presentation ? Thank you.
My son-in-law developed GBS on a walking holiday in Nepal - he had a 'flu vaccination which may possibly be how he received the virus but not possible to tell that definitively. His legs and arms were paralysed and he was brought back to England straight into hospital. It took a long time, hard work and lots of determination to exercise his way back to normality. Now in his fifties he still plays golf and football - also coaching young people. Shaking hands when very tired is the only indication left of this dreadful syndrome.
amazing story! i had gbs when i was 5 right after i had my first flu shot. We still aren’t for certain that the shot is what caused it. I still get really bad pains in my hips and sometimes knees.
@@PurpleHermitcrab it is certain after reading yours and above comment.. My loved encountered GBS exactly couples of hours later after vaccine shot.. Drug in shot, vaccines effect differently into each humans body .. Therefore I draw my conclusion never take vaccines when your 100% perfectly healthy.. But if you have to take vaccines neccesrly just make sure it is minimum quantity to try the effwcts
Hey, glad you've recovered. If you found the time, I'd appreciate if you could elaborate on the 5% you think you're missing from your recovery after a few years.
I had GBS when I was 5 years old. This was in 1968. I had a very severe case and was on a respirator and fully paralyzed. They did not know much about it back then. All I can say is I caught it 2 weeks after a childhood immunization. Today we know certain vaccinations cause GBS. Covid and the shingles vaccine. All I can say is be very careful with vaccines.
I had an acute (within hours), purely sensory (non-motor), diffuse neuropathy that was extremely painful and on every inch of my body after a car accident. It felt like I was being electrocuted, burned, or stung. I never had motor issues. But everything else presented itself as GBS. It started in my feet and spread to the rest of my body hours later. My EMG was normal. My symptoms did not get better. 15 neurologists didn't know what it was. 1.5 years after the wreck and onset of symptoms, my EMG started showing demyelination. I was diagnosed with CIDP. I also had a nerve biopsy that showed Small FIber Neuropathy. I started on IVIG a year ago and it was helped the pain a lot. I get frustrated because there's nothing in the medical community about a sudden onset of purely sensory, diffuse, neuropathy. Well I had it and it never went away. IVIG helps me manage, but I suspect I will be on it for years now. I wish they had given me this right after the wreck ... insurance would have never paid for it right away before an abnormal EMG though... weird that it took that long to show abnormality in my EMG, but my symptoms were acute. Does a purely sensory GBS exist?
I am currently under investigation waiting for a diagnosis but everything in this video seems to be describing my symptoms I become paralysed from my waist down n it last for hours sometimes 6 hours plus.. I have never had this issue it’s really hard having to accept I have a physical disability n have to now go everywhere by wheelchair…
excellent synopsis...I'm a medical assistant...we ask patients before vaccinations like influenza if they've ever had "Guillain-Barre" syndrome...some patients have asked me..."well what exactly is that?"...so I thank you for the concise synopsis...I'm thinking of checking out the med books to use as a reference...thank you!
This picture should be enough to make diagnosis, but my husband doctor refused to give plasma pheresis life saving treatment. Another doctor did testing and notice elevation of protein in spine. It almost cost my husband life because the delay in treatment one week after recuperating from covid
You have described it well in short and clear. I have been suffering from G.B.S.since August 2020. Thanks to Dr.Srinivas Reddy & Dr. Harish who gave me life. I have recovered almost but still under medication because I'm losing my voice whenever I'm stressed /tired. What may the best way to overcome this? Could you kindly suggest me.
my father suffered from GBS got it in the Korean War. they said he would never walk again. I guess they didnt know my dad well enough. Yes he did walk infact everyday to the park but he was limited it attacked his heart muscle and his hands. died at young age of 53
I had it about 2 weeks ago, also tested positive for covid but showed no significant symptoms for it... pretty much 70/80% paralysed on my left side!! I was given a transfusion of human normal immunoglobulin for 5 days (sick every time) but they caught it early and about a week later was back to my old self 👍
My mom had this. She was in hospital for a long time. They had her on a blood machine. Then she went into rehab. Made a full recovery. But then had heart attacks and cancer and died. 😢 I miss her so much.
