Guillain-Barré Summer (GBS) - Evelyn's Story

[@moin7809]

I got GBS in 2019 when i was 11 years old. I was paralysed for 1 month completely. After a month a just like you in the video. I literally walked like an old man that just got hip surgery. I was in rehab 2 times. The first time my face paralysed half way just like yours. Then i went back to the hospital. After a nother month on pain killers, some medication and a nother therapy with some i’vs i got back to rehab in a wheelchair. I was able to walk again at my 12th birthday. It took me some time to walk safely again but i managed to to it quite quickly.

[@margaretnajafi8108]

My grand daughter is 12 and she got bcs two weeks ago we are all devastated. She is in a lots on pain and do you think you can help us that what can we do for her or can you send a message for her that I can show her. My name is Margaret. Thank you

[@HopeMace-vv1kt]

I also am a GBS survivor from 2016. I was in rehab for a year, paralyzed for 6 months. I was so blessed to have it only up to my waist, so no vent. I’ve been very fortunate to be able to walk again. I use a walker and still have some balance and leg strength issues, but overall have a normal life. You don’t know how much you miss walking until you can’t. I’m so thankful for the ability to live an independent life!

[@vickylot1291]

Hi my nephew is in a hospital in Mumbai, India. for the last 20 days He is suffering from GBS thats what the doctor told us and He is 6 yrs old. He's half body from stomach to toe is paralysed he is not feeling anything. Doctors seems confused they are like your nephew is not responding like normal kids do and doctors are not sure whether he will recover or no. As uncle and family member i am scared and don't know what to do. Could please help me out here

[@edclairmont5564]

@@vickylot1291 Hi , the most important thing to do is to have the IVIG transfusion to combat the virus. I was paralyzed for 36 days & then began exercise movements in bed for 5 days then went into physio in a rehab ward for 30 days . Now that I am home I exercise every day . Wishing your family member improved health & speedy recovery.

[@baussify]

around 5 months ago, i genuinely was in the same exact position. Now, 5 months since you posted, i’m almost back to “normal”. Fully independent when it comes to walking on flat ground, or uphill. and almost there when it comes to walking down hill (walked down my first flight of stairs without any assistance for the first time the other day. No railing, no cane) I was talking to my physio about how you don’t realize how grateful you should be for the ability to just WALK, until you lose it, around 7 months ago. hopefully you have made progress since this comment.

[@randysabel]

I had GBS when I was 34-35 yrs old. Saturday, October 18, 2003 went to Urgent Care Clinic . Numbness, tingling & weakness in extremities. No knee reflex. Sluggish walking. Difficulty sleeping. Told to see my doctor on Monday. Monday I was too weak to drive a vehicle. My face muscles were completely paralyzed. Came into the ER by ambulance. ( I lived alone ). The blood work results were intercepted from Saturday and were good. Neurologist was called in to the ER and told me he suspected GBS. Spinal tap was done and confirmed it was GBS and they put me in ICU with Immunoglobulin therapy. On Wednesday I could not stand. Thursday I could not roll over in bed and need a paste diet to eat. Occupational therapy started while still in ICU. Friday the progression stoped. Saturday and Sunday though my breathing was not strong, my gas exchange was still okay so they did not vent me. I moved to the recovery/therapy part of the hospital one week after diagnosis and ICU. It took 1.5 weeks until I had the strength to roll my self over in bed. 3 weeks I could stand and start walking with a walker. 5 weeks I was back on solid food. On December 5, 2003 I was discharge to go home as I could walk with a cane. Lots of out patient therapy. I was back to work full time + overtime end of May 2004. Physical therapy was a big help. It took 5 months before my eyelids would close all the way. I had numbness and tingling in my fingers and toes for 8 yrs. To this day, when I am stressed, like working a lot of hours, my face feels numb. I went through all of this by myself as I was single. I had really good insurance at that time, well at lest compared to now. I was not set back to much financially because of my health, mortgage disability and income insurance. I can walk long distances and Jog/run again. I do a lot of bike riding with my friends in Spring, Summer and Autumn. Snow shoeing in winter. I DRAW STRENGTH FROM THIS TIME IN MY LIVE. REMEMBERING WHEN I WANTED TO BE PHYSICALLY ACTIVE BUT, COULD NOT. I AM MOTIVATED BY THIS EXPERIENCE TO KEEP PUSHING MYSELF IN LIFE’S CHALLENGES.

[@crichlow11]

I just got diagnosed in March. This is a long road but listening to your story I have hope and faith.

[@denisedeberardino6188]

I am a nurse and had my first symptoms on St Patrick’s Day of this year. I just started walking with a walker, but my arms and hands are still very weak! We can do this!!! Best to all.

[@Slickone119]

Don’t ever give up. I had GBS at age 73. It took me by surprise and came on very fast. I was paralyzed from the neck down for almost a year to get to where I could function on my own. I have not fully recovered, but I am getting better every day. God bless you and continue to watch over you.

[@leanardosukdeo1412]

I was diagnosed with GBS April 11 still recovering 🙏 Whoever is going through GBS you will get better keep pushing ‼️❤️

[@emma-ed1ym]

Have you had drop attacks in the early phase? Was there numbness in pelvic region ?

[@karencarney7595]

How are you feeling, half a year later?

[@johnhironimus5748]

My journey started may 17 2023 still not walking unassisted but working on it hopefully your better soon bless you and wishing you much success

[@Cash.mir.99]

I was diagnosed with GBS during my 3rd trimester of pregnancy, right before COVID. 4 years later and still currently suffering from the symptoms... but I'm also still here.❤

[@jsaravia24]

@@Cash.mir.99 I'm so sorry to hear that. If you dont mind me asking, what are the symptoms you suffer from currently? My wife was diagnosed in 2021 and she can walk, but is in bed 90% of the time and still has nerve pain that can flair up pretty bad. What methods do you use to ease your symptoms? Thank you for sharing you experience

[@LDQBBQ]

I'm currently in recovery and your story is the most similar to mine so far. I experienced very mild symptoms with minor face paralysis for about 5 weeks until everything accelerated rapidly. I lost balance, coordination, and eyesight very rapidly. I developed numb limbs and slurred speech. Severe, intense headaches. I started IVIG and bottomed out during my 3rd day of IVIG. After that, I started noticing improvement. Then it felt like I was improving by the hour and certainly have made significant strides every day since. Physical and occupational therapy has helped tremendously. The level of care all of the doctors, nurses, and therapists have given me has been exceptional. My family and friends have been wonderful and supportive. I've grown a new appreciation for life and feel a tremendous sense of gratitude. I'm grateful this hasn't hit harder, and I'm grateful for my speedy recovery. I see this experience as a blessing, as life should be more fulfilling now. I'm still in the hospital and have a ways to go, but the entire medical team thinks I'm recovering very rapidly. It was neat seeing a story that more resembles mine. Thank you for sharing and I hope you always continue to recover.

[@mandidorrell2310]

Hey this is wonderful, thank you so much for sharing. I have a friend who has been in the hospital since Saturday and she finally got her GBS diagnosis this morning. I see it's going to be a long road for her so thank you for the message that visitors and support and love help with recovery.

[@marthawhite8235]

I'm a GBS survivor. had it in 2010. full coma, full life support, complete paralysis besides blinking my eyes. they told my mother to pick a nursing home that took vent patients bc I was going to be a vegetable until I died. I didn't know that til last year, my parents never told me while going thru it that the doctors were predicting me to never recover. best decision they made. I would love to chat sometime about GBS if you ever want to. it's my 11 year anniversary of it and I'm realizing I need help processing everything. I'm glad you made a recovery. how did you get to tell your story?? I’ve been wanting to get my story out there but I do where to start. love and light to you. 💪🏽💪🏽🖤✨

[@Myworldmymind908]

Hi sorry to hear you went through this . Have you fully recovered ?

[@dr.omarfaroque]

what's your condition right now?

[@marthawhite8235]

@@Myworldmymind908 yes other than some numbness in my thighs, muscle spasms, and the PTSD and mental toll it took on me will always be a struggle.

[@marthawhite8235]

@@dr.omarfaroque physically looking at me you’d never know. I have some numbness in my thighs and I get random nerve pain, and I have muscle spasms. I have really bad PTSD from it and other mental health issues.

[@arorandeep]

What was the course of treatment you took?

[@abdn492]

Hi! My wife is currently recovering from GBS, she just started taking her first few steps (using a walker) and is on her way to recovery. I want to thank you for sharing your story, I could relate to every word you said because it's something that my wife would say. Thank you very much for giving us hope. And I want to say to everyone going through this; you are NOT alone

[@keithsewell777]

Thank you for sharing! I need to hear your story and read about others just so I don't feel like I'm alone. I was diagnosed with GBS in June of last year and I am still working through recovery. Some days I'm good and some days I'm bad. Today is one of those challenging days. When I share my story so many people get inspired but there are days when I need inspiration. God bless all those that have embarked on this journey, I love ones that take care of us, and the medical professionals doing all they can to treat us. I will see you at the victory dance!

[@karlapalmer9328]

I had GBS in 1965vwhen I was 8. The day I was admitted to. The hospital and a spinal tap, I was transferred to a much larger hospital. That night my heart stopped and I had to have a frack. Things are so much better now!! I was extreemly lucky, God watched over me for sure!!

[@ContikiCuddler]

I DEVELOPED GBS IN 2018. I WAS IN ICU FOR FOUR MONTHS, TOTALLY PARALIZED, IN AND OUT OF CONSCIOUSNESS, AND ON LIFE SUPPORT. I WAS IN EXTREME PAIN MOST OF THE TIME AND WAS UNABLE TO TELL ANYONE THAT I WASN'T GETTING ENOUGH PAIN MEDICATION. THINGS WERE SO BAD THAT MY FAMILY WAS TOLD I WAS PROBABLY GOING TO DIE. I NEARLY DIED THREE TIMES. I SWEAR I WAS SLIGHTLY DEPRIVED OF OXYGEN AS MY COGNITIVE FUNCTION HAS BEEN SLIGHTLY AFFECTED. WHEN I WAS FINALLY CONSCIOUS I HAD TO FIND A WAY TO GET THE NURSES ATTENTION. BLINKING WAS USELESS BUT I FOUND CLUCKING MY TONGUE WORKED. THE NURSES HAD TO GUESS WHAT WAS WRONG. IT WAS USUALLY PAIN. UNFORTUNATELY NO ONE UNDERSTOOD JUST HOW PAINFUL GBS CAN BE. EVEN THOUGH THEY THOUGHT THE AMOUNT OF MEDS THEY WERE GIVING ME SHOULD HELP RELIEVING THE PAIN TOTALLY, IT WAS ONLY INTERMITTENT. WHEN I WAS FINALLY WELL WELL ENOUGH TO BE TRANSFERRED TO A REHAB HOSPITAL I STARTED HAVING PROBLEMS WITHE MY EYES CRYING ALL THE TIME. IT WAS THOUGHT IT WAS THE AC CAUSING IT. THEN ONE NIGHT I WAS VISITING AT THE NURSING STATION WITH A FEW OTHER PEOPLE. IT WAS THEN A NURSE ASKED ME IF I KNEW I DIDN'T BLINK. SHE SAID SHE'D BEEN WATCHING ME AND IT TOOK 20 MINS BEFORE I BLINKED. THAT WAS THE START OF FACIAL PARALYSIS ON THE RIGHT SIDE OF MY FACE. IT DID A LOT OF DAMAGE TO MY EYE, THUS THE CAPITAL LETTERS. THE ENTIRE SIDE OF MY FACE BEGAN TO DROOP. BOTH TOP AND BOTTOM JAW LOST THEIR ALIGNMENT AND I HAD TO HAVE ALL MY TEETH REMOVED. I LOST PART OF MY SPEECH AND HAD TO GO THRU SPEECH THERAPY. AFTER MANY MONTHS OF OT AND PT I WAS ABLE TO GO HOME. I WORKED REALLY HARD AS I TOLD MYSELF I WAS GOING TO WALK OUT OF THE HOSPITAL. AFTER 14 MONTHS AND WITH THE HELP OF A WALKER I DID WALK OUT. I STILL HAVE PROBLEMS WITH MY ARMS, HANDS, LEGS ESPECIALLY MY FEET, MY MOUTH AND EYE. I'M STILL IN PAIN NEARLY 24/7 WHICH IS EXTREME EVERY WEEK OR SO. NO DOCTORS SEEM ABLE TO UNDERSTAND THE PAIN I'M IN. TO MAKE THINGS WORSE I'VE HAD MY PAIN MEDS REDUCED EVEN THOUGH I BEGGED THEM NOT TO. IT WAS THOUGHT THE AMOUNT WAS TOO MUCH. SO NOW MY PAIN ISN'T CONTROLLED. I STILL HAVE PROBLEMS WITH BALANCE BUT AM HAPPY I CAN WALK EVEN IF I HAVE TO USE LEG BRACES. I HAVE HAD TWO RELAPSES. AFTER DRS. GETTING TOGETHER THEY HAVE DECIDED I HAVE CHRONIC GBS AND NOT CIDP. MY SYMPTOMS DON'T FIT THE BILL OF CIDP. EVEN THOUGH I STILL HAVE PROBLEMS, STILL IN PAIN AND WILL NEVER COMPLETELY RECOVER, I AM THRILLED THAT I RECOVERED QUITE A LOT AND DIDN'T END UP TOTALLY PARALIZED FOR LIFE. I AM EXTREMELY THANKFUL FOR THE IMPECCABLE MEDICAL STAFF, OTS, PTS, AND MY FAMILY AND FRIENDS WHO STUCK BY ME AND AND NEVER GAVE UP. BUT I GIVE ALL THE CREDIT TO JESUS. HE WAS THE ONLY ONE I HAD TO TALK TO WHILE PARALIZED. IF HE BRINGS YOU TO IT HE'LL BRING YOU THRU IT, AND HE DID.

[@pablovicentetixfamily6961]

100% it's all about love. Love lifted me too. Human touch, seeing those you love...

[@wendyhumphries3079]

I was diagnosed in april of 2003 about 2 weeks after I had a stomach virus. I too thought I at first had a pinched nerve and visited a chiropractor. It started off with my fingers tingling on my left hand and then gradually moved upwards and started in my feet and went upwards. Stayed in the hospital for about 3 days and then home health came for a week to administer the IVIG. I returned back to work in about 2 and a half months and I feel very blessed I was able to recover rather quickly. It is humbling to one day be able to walk and run and the next be completely helpless. Your body can do some really crazy things and nothing surprises me anymore! Prayers to all!

[@matthewwilkes1712]

Hello, that is amazing. You were that you. You recovered that quickly from it. I had it. I was diagnosed with it last June and I was in and out of hospital walking again in just under three weeks. I had Lyme's disease at the same time. I've got some symptoms where I've lost a bit of movement but I I can get round and I can see my family so I'm thankful for that. It's an awful thing to have any. Once he's had it is it's not nice. I don't wish it on anyone but it's amazing where you know we get through it and we can tell our stories well done to you

[@richardkirkup1376]

God bless you, my wife had it total paralysis 3months in hospital and another 1 year to get well again a very frightening disease but she made a full recovery

[@giftmziza8409]

Hearing this gives me hope for my Husband who is currently in ICU with a total paralysis. Please help on how I can deal with this frightening disease

[@sjjb2]

my best friend soul mate has been diagnosed with this today she is in hospital. thankyou for this inspiring vid

[@denisehayes2298]

How is she?

[@jsaravia24]

My wife was diagnosed with GBS in 2021 and has had a very slow and hard recovery. When she started having her symptoms she lost all her memories from about 1-2 prior to the diagnosis. I haven't seen much connection with permanet memory loss with GBS through my research, but I feel her memory is what is inhibiting her rehab (she doesn't retain any information a physical therapist or occupation therapy to practice at home). For example, she'll ask me the same question 2-3 times within the same hour. Has anyone that has had GBS have serious memory? The 2 neuroligist we've seen seem to brush aside the memory issue and attack the nerve issue, but her quality of life is so low because of her memory. Thank you for posting this video.

[@BrightFallsTV]

Same thing. I could tell my wife good morning 3/4/5 times a day😢, im 2 years in, memory got better, but i cant walk and still in the wheelchair😢

[@jsaravia24]

@@BrightFallsTV Keep on fighting and progressing! My wife last year (3 years since GBS) started feeling more comfortable walking with a walker and even without it sometimes. She still needs to the use the wheelchair on long trips like to the mall, but progress is being made. Good luck to you!!

[@klerois]

I got GBS diagnosed a few days ago and hearing your story really motivates me and gives me hope. Thank you !

[@EatonButthull]

I was diagnosed in early April and have been out of the hospital for 2 weeks. I am walking with trekking poles, and recovering a little bit more each day. Best of luck to you.

[@lifestylewithshey1322]

Did you get face paralysis?

[@Hondaddybuilt]

Keep pushing i suffered from gbs in 2007 when i was 12 years old. Expected to recover 100% like everyone else but i did not but very thankful forevermore keep pushing and thug it out much love !

[@yusoforlandoorlaza3905]

I'm a GBS survival last 2019 of October i thank to God and family and friends fast recover.

[@NFSHP21]

Glad you started recovering. Just goes to show you that the human body is tougher than what doctors say.

[@AtomicElectronCo]

WOW. What a story! So very happy you recovered....your story has made me feel better. I so far have a mild case and I'm TERRIFIED. I can't imagine how scary it was. Health is EVERYTHING. Everything. Never take your health for granted. No one who has had GBS will. Your story has made me cry...especially when you talked about running. Please stay healthy. I'm not religious at all, but GOD BLESS.

[@saultopaul3981]

Ah!! It’s great to hear this story! My gbs is moving a little slower. It’s been about a year now. I’m looking forward to walking! The nerve pain and buzzing in my hands and feet has improved some. Great to hear this story! Thnx

[@mocamckenzie6407]

I was diagnosed with gbs in2014. Never knew or heard of this until a few days in hospital. I noticed getting up for work I was weak, Bp was high couldn’t function like I used basically no energy. In the evening at home in the bathroom my eyes was moving so fast my kids had to call ambulance. To cut the story short coma with feeding tube ( cannot remember my daughter know more) and rehab for 3 months. Right now from gbs I still have numbness on my left but its strong and weak on my right side, using a walking stick outside. Swallowing or drinking still have to be careful because I will choke. So grateful to find out I’m not the only one because no one talks about this, only recently by connecting it with the Covid vaccine. So I’m a gbs & miller Fischer survivor because I know some people have this worser. It’s taking this one day at a time ❤

[@edclairmont5564]

I also was a GBS patient. I came down with Co-vid virus from Feb. 16th 2023 till March 04th 2023, full recovery without any real difficulties. Then on March 18th 2023 I started getting pins & needle symptoms in my feet & hands also weakness in my legs & arms. On the 22nd of March 2023 , I collapsed & was admitted to the emergency ward , the next day I was transferred to another hospital where I was given a spinal tap & diagnosed with GBS. Then I had 5 IVIG treatments , I was unable to move for 36 days. I started physio very sluggish for the next 5 days. I experienced trouble swallowing & speaking clearly. On my 42nd day I was transferred to a rehab wing at the hospital & began daily rehab starting with arm & leg exercises then progressing with a walker. Then I went on to an exercise machine then the use of a cane. After 30 days of Rehab I was able to go home. I pushed very hard to overcome this virus & still have to exercise every day to get back to where I want to be. The one thing that has helped me to overcome cramping in my Quad & hamstring muscles was my taking 250 mg of magnesium twice a day. I am 81 yrs young & not ready to lay down . Wishing all those going through this virus a speedy recovery & improved health. My real motivation was to get back before my wife remodeled the house.

[@rajtess]

I am suffering from gbs from last 2 years now so please let me know as to how can I be healed of this problem I was admitted to the hospital on 20th of Feb 2023 and was in the wheel chair for around 5 months now I am able to walk a little but with the splint on the feet as I am having this foot drop so kindly suggest something for me 🙏🙏🙏🙏🙏

[@edclairmont5564]

@@rajtess Hi Raj, the most important thing is to have the 5 .. IVIG ( intravenous immunoglobulin) treatments. What I also take is 25mcg of vitamin D twice a day, 1000mg of vitaminC+Zinc twice a day also 250mg of magnesium twice a day. Also 1 hour of physio a day at home. ( muscle stretching each day.) Good luck on your recovery.

[@victorjames3073]

you give me so much hope

[@bobwakefield7875]

At 62 (63 now) I was diagnosed with GBS March 1 and still recovering 🙏 Have good days and really bad days too. Can't work or do fine motor skills with my hands and speech is difficult at times. Fought my way walking and have good motor reflex in my legs and lower body, no real strength issues, just tire so damn fast. Worse is my inability to write or print, so filling out LTD and CPP forms has and continues to be a challenge. Don't want pity just some help working through the quagmire of getting financial assistance.

[@berrymucuckiner4890]

I am currently recovering from miller fisher. You are a amazingly strong person.

[@markhadley1545]

She did a wonderful job of describing it.

[@hhajvmvk4686]

I've had GBS and I was in and out of the hospital in less than 3 weeks

[@melvinetheridge2134]

You were lucky. I went from tingly hands and feet to having to be intubated in four days because my diaphragm quit in march 2021. I spent 2 weeks in icu another two weeks in recovering then another month in a rehab hospital. It was another 5 months before I could walk on my own. I still have nerve damage in my toes.

[@andreaandrea6716]

This was SO BEAUTIFULLY detailed and recounted! Thank you!!! SO informational!! Wow. I kept thinking, all the way through, that it was the love and attention, the focus and dedication of all those concerned that magnified the healing. What a beautiful story of recovery!!! Brava! Thank you thank you!!

[@JN-yh8ze]

I'm sorry that you went thru this, and am glad that you have mostly recovered from this disease. Thanks for sharing your story, and best of luck to you. My Father got GBS in 1979 when I was 9 and my sister was 7. Although doctors here in NJ weren't sure what was wrong with him, they kept running tests. They thought he had meningitis, a stroke,... They thought he was in a coma, but my Dad said he heard every word, but couldn't talk or move anything. He was on a respirator/vent. for 2 months. A doctor from PA hospital, who was making rounds on his patients, saved my Dad's life, and diagnosed him with GBS.... GBS is a very rare disease, and was not too common in that area of NJ, or during that time. My Dad had the most severe case of GBS. He was in the hospital and rehab for a year and a half, part of that being out patient. He had to learn how to walk and talk all over again. His symptoms started with tingling going down the one side of his body, arm/leg, and then he couldn't open his one eye. Within hours, he was totally paralyzed. After some months, he started to get movement back in his eye on one side, then his foot, then leg and arm, then eventually it all came back.... We would go thru the alphabet and he would blink when we got to the letter he wanted, we'd write it down, then start again to spell out a word-phrase or sentence.....It was a long road for him. He now walks with some disability using a rollator but he walks. He likes to eat pizza, watches The Three Stooges, and is a big Eagles fan. Ha! Thanks to all for sharing your stories. You give courage, hope, and strength to one another, just by letting others know that they're not alone in their struggle. 9:18 0:15 0:15 0:15 0:15

[@shallugarg3443]

can you please tell how long eas he on a ventilator/respirator

[@JN-yh8ze]

​@@shallugarg3443about 2 months

[@nyghtly-derek]

A common thread in these stories is that people go to the hospital _knowing_ that something is wrong, and then get sent home because the doctors fail to diagnose GBS. It's sad to hear because the patient could become paralyzed and then stop breathing after being discharged.

[@TravisRowe-mc7ib]

I got gbs from the flu vaccine in 2022 I was completely paralyzed and still have trouble walking. It’s so difficult getting any kind of help because no one understands gbs

[@valeriefragnon551]

Bonjour à tous, Il y'a 11 mois, j'ai été hospitalisée pour paralysie totale. Cela faisait des mois que j'avais de plus en plus de mal à me déplacer. J'ai passé 10 jours en soins intensifs où j'ai déclaré une déficience respiratoire et j'ai donc été transférée en réanimation où j'ai passé 3 mois et demi afin d'y être intubé. Ils m'ont placés en coma artificiel pendant 5 jours afin de protéger mon cerveau et mon cœur car les douleurs étaient trop fortes. J'ai par la suite fait 2 embolies pulmonaires et 2 infarctus. Il a également été découvert que mon estomac était complètement dilaté et remplit d'air, il a donc fallu commencé par le vidé à l'aide d'une sonde nasale. Mes Médecins ont ensuite effectués une gastrostomie afin de pouvoir m'ydrater m'alimenter et me donner mes traitements. Mais cette Maladie aura été un Mal pour un Bien car lors de mon premier scanner mes Médecins ont décelés une tumeur dans mon rein droit qui s'est avérée être cancéreuse et qui est malheureusement découverte trop tard dans la plupart des cas. Je vais être opérée ce vendredi matin et bien-sûr j'ai peur comme nous tous ici, mais si je réussis à battre ce Cancer cela aura été grâce à cette horrible maladie qu'est la Polyradiculonévrite Chronique. C'est la forme Chronique du Guillain barré aigu. J'ai bénéficié de plusieurs cures d'immunoglobulines qui m'ont énormément aidés et après 10 mois d'hospitalisation, je suis rentrée chez moi depuis le mois de mai 2023. J'effectue dorénavant ma rééducation en hôpital de jour, 3 fois par semaine. Ma première hospitalisation date du mois d'août 2022. C'est très dur de voir son état de santé ce dégrader autant du jour au lendemain mais c'est une leçon de vie à passer. Je vais mieux mais le combat sera encore long et difficile. Cependant, je sais que je peux y arriver et que nous le pouvons tous. Il faut juste y croire. Bon courage à tous. 🙏🙏🙏

[@KmHowes]

I was struck down with GBS in January I spent a month in hospital I am now in rehab for 12 weeks after the fourth week I started walking again so hopefully I will make a full recovery ,

[@jomesjernandes]

My mum just got diagnosed after a week of symptoms and i'm just hoping she doesn't get long term damage.

[@haydenxpickett07]

as someone who was diagnosed with GBS recently. hearing this made me feel better and knowing it will be okay. this condition is so scary and it’s been very hard. my walking skills haven’t came back yet and i don’t expect them to, but therapy has worked wonders so far.

[@denisedeberardino6188]

You can do it! I was diagnosed March 17 and am using a walker with assistance! Keep at it!

[@carolynmareck5112]

And always smiling!!

[@qaiseralirajput.7043]

18 months ago i fall in gbs nd keep surviving with wheel chair.i m so dipress but God is great

[@ventilator98]

GREAT GREAT VIDEO!!!! Seriously!! I know Guillain Barre Syndrome very well, and It SUCKS!!! But patients with Guillain Barre Syndrome, Are TROOPERS!!!!

[@aldomusiclover]

Thank you for this video. It gives me hope. 1 week into GBS diagnosis in ICU. Done with IvIG. Heading to rehab place tomorrow. Wondering when your face paralyzes went away?

[@careycrews1]

My 19 yr old daughter just had first of 5 Plasmapheresis treatments for GBS. She went from working on a film set Tues to almost completely paralyzed by Sun. Oddly she regained partial use of her arms a few days later but before any treatments started. After first Plasmapheresis her torso is a bit stronger. My daughter hasn't experienced facial or breathing issues nor loss of feeling. Her journey of recovery is new and we're very hopeful. We'll post on her progress.

[@deborah5763]

I had guillain-barre syndrome in 1958. I was 6 years old. I am 71 years old now. I was completely paralyzed, but my lungs kep working. I did not need to be put in the iron lung machine. I was in the hospital 3 months and physical therapy for 3 more months before I returned to 1st grade on crutches. It was very scary and traumatic for a 6 year old.

[@mohitsrivastava3381]

R u taken ivig or plasmpheresis

[@BrightFallsTV]

I got it once, it lasted 4 weeks and went away, 5 months later i got it again and here i am 2 years with GBS and still bound to my wheelchair 😢😢😢

[@pattyhazeres8120]

My husband is a GBS survivor!!

[@cashtalks6253]

I just got home from having this. I went to bed fine and I woke up with my arms legs weak within 4 days I couldn’t lift my neck to not being able to talk and hard to swallow.5 weeks in I’m walking with a walker and now 6 weeks I’m using the walker little.but this a lot like recovery after I broke my back 16 years ago.

[@speedysmoke]

I had GBS in 1986, thankfully fully recovered. Now 6 yrs ago I was diagnosed with CIDP, cousin to GBS. I do IVIG treatments every 2 weeks.

[@speedysmoke]

Oops, meant 1996!

[@tamilynedwards8388]

By chance in that year take a flu shot?? They have thimerosal in them which is 50% mercury which is a neurotoxin. Maybe why the new chronic form. That put that crap in most all vaccines as a preservative. Highly toxic, some ppl are already allergic to it. I was. I come down with gbs/cidp in 1997 from my one and only flu shot. 20 years of ivig, I had plasmapheresas, salumedrol, prednisone... cyclophosphimide...cancer drug to kill my immune system... They didn't want to treat me right. I had to go to mayo clinic to get right diagnosis. First they said ALS.. go home and die... not kidding. I was put thru it. I did monthly ivig to 2018, doing decent, never able to run again or get up off floor without looking like toddler! Steps are a bear for me and I have energy issues sometimes. But recently it's hit me again. Talk about ptsd... Good luck to you, my last Diagnosis was cidp.... this is a foul unpredictable thing to deal with. God be with you.

[@laurengrant7722]

I was diagnosed with gullian barre syndrome last year so still recovering think im going to be like this forever

[@debrawalker4642]

I got mine within days of getting a tetanus vaccination 2008 and I still have symptoms now.

[@tamilynedwards8388]

Probably the thimerosal..or mercury as preservative in it. That is a neurotoxin! Vaccines are bad, I know.. happened to me. Sorry😢

[@go1d3n.nightmare]

When I was younger I became very ill with what we thought was a fever. I became very weak and it was getting worse through the week. We didn’t know at the time but that was actually me becoming paralyzed. One night my mom had enough of doctors just saying it was the common flu and she argued with my dad about taking me to the hospital. He didn’t want to but she ended up telling him they were gonna take me. When we arrived at one hospital they asked my mom if I was faking… they literally stuck needles under my nails to see if I had any feelings and they even put a catheter in me. I didn’t flinch a single muscle. My mom got angry that they accused me of that and proceeded to take me to children’s hospital. That same night when I arrived my lungs had collapsed from the paralysis and I went into a coma. Doctors said if my parents hadn’t taken me to the hospital that night they would’ve found me dead in the morning. I ended up having GBS (I also had a spinal tap as well). I stayed in the hospital for a month with a feeding tube and had physical therapy for over a year to regain my strength, learn how to walk again, learn how to eat, etc. I was very lucky to have made a full recovery. All the doctors and nurses in the hospital came to visit me in my room as it spread around the hospital that I was a “miracle baby.” I can’t imagine if my mom didn’t take me that night…

[@peanutlikesbeans]

I had to laugh to myself in that I described my walk as a drunken penguin too. My first symptoms I noticed was a slight numbness and tingling in my fingers and toes. I just sort of ignored it. The next evening I woke because I needed to use the bathroom. My legs felt wobbly so t walked around the house to see if I would improve. I found I had to hold onto the walls to steady myself. I woke my wife and said "Ruth, I need to go to the hospital, something isn't right" I side I can drive myself. As we stepped outside onto the porch my legs collapsed from under me and an ambulance came and took me to the hospital. It was 3:30 in the morning. As I described my symptoms the doctor said "it almost sounds like Guillain-Barrè Syndrome" but I was showing unusual heart issues as well. So I was airlifted to University hospital in Aurora Colorado which is 100 mi away. Within two more days I was paralyzed from the neck down. The diagnosis of GBS was confirmed with a spinal tap. I spent two months in the hospital. The second month was for physical therapy to get me to walking again. However, good also came out of it as they also discovered a heart condition that would have killed me if I had not been treated for it. So as horrible as and painful as Guillain-Barre syndrome was, it saved my life because of it's going to be of my heart problem. Thank you for sharing your story. It is quite inspiring for those of us who went to the same experience or similar experience

[@russellsaxton3984]

Thank you for sharing your story. As a GBS survivor I was able to relate to everything you shared. My bout was triggered by Covid and now I am super paranoid that if I get Covid again I will end up with GBS. Is there any data on recurring GBS?

[@dtombe.]

I was diagnosed with GBS mid April 2022 and still recovering, the begin was strange I had a pain on my left leg next day I wake up and I can't move both my legs later my hands

[@laurachirikian7594]

Hello, thank you for sharing your experience, please provide details about IVIG treatment, what is it? Its very important for me. Thank you for your help. Thank you in advance.

[@BrightFallsTV]

Imunoglabulins, i did 6 bags, didn't helped kuch my nerves were already heavly damaged, cause my doctors didn't wanted me to be hospitalized, today im still disabled 2 tmyeats with GBS, i dont have feeling in arms and kegs,, i cant stand, i have tingling sesnastion, always cold, no matyer what, memory got better.few months after my diagnosis

[@rachelbeattie7336]

from my fist symptom to last symptom was 3 days i couldnt see one day properly and 3 days later i was in the hospital on a ventilator

[@golvathusantosh2201]

How much time she took to recover from GBS disease?

[@samkitty5894]

How is GBS or it's cousin CIPD diagnosed? I have neuropathy below my waist that feels like GBS. I've seen army of doctors and specialists over the last 9 months. X-rays, CT scans, EKGs, MRIs, nerve conductivity studies, etc, etc. No diagnosis at all... So frustrating. Maybe they are hiding the dignosis due to my advanced age. GBS takes months even years to treat, and that costs money. I went from being 100% mobile to unable to walk. My legs feel like concrete blocks.

[@crichlow11]

How long did you have therapy for?

[@nitughosh5923]

Do GBS relapse? Can anybody give any clue on this topic ? I am a GBS survivor I was diagnosed with GBS 13.07.24 ,after done with ivig now on 22.08.24 i can walk nicely,but my spinal cord aches very much after a long walk .so far my legs were paralysed .My doctors just made the diagnosis in no time so it not spread to other parts .Do GBS relapse or comes back?

[@AtomicElectronCo]

Must be nice to live in Canada where they can focus on you and your illness...not if your particular type of insurance will cover which treatments.

[@kellylopez6524]

My boyfriend is currently going through this he just got diagnosed with this today. If anyone can give me some advice on how your journey is going will be great. 🙏

[@dulinianjalie9686]

How is he now?

[@lindatomsche6282]

My 2nd time with GBS. Muscle weakness in legs first then nerves burning on top of both hands. Upper body went into weakness next. Face and whole body have inflamed nerves that burn to the touch. Appointment set for January. Hope to keep going strong til then. At 18, had this and hospital stay for a week. Could not walk . Was put on morphine for pain.

[@naomiwoods2288]

My husband has GBS. The neuropathy is so bad that sometimes he wants to die. I've been on the internet all week looking for information on neuropathy relief.

[@tamilynedwards8388]

Check into if he had a flu shot or any other vaccine... if it had thimerosal..mercury in it. That is a neurotoxin .... also if he has old amalgam filings, also mercury!! Look up these things. The body defenses can't handle. The more you have, plus it is accumulated, it can trigger.

[@musajoya]

I am a survivor of this disease as well. In 2003 when I was 23, one morning I felt numbness in my hand fingers which progressed very quickly and made both sides of paralyzation within 2-3 days. Fortunately, it did not affect my head and brain. I experienced a full paralyzation from my neck down for about 6 months and then it started to recover gradually. The recovery started back from the hand's toes and went to the body and down to the legs and feet. I am lucky that survived to live longer but unfortunately, I did not fully recover and the improvement has stopped. I have weakness in all parts of my body, foot drop, and hand atrophy. I cannot walk fast and run, have difficulty using stairs, and have lots of other difficulties. Is there any hope for full recovery if I refer to a good hospital after this long time? I used to live in Afghanistan but am currently settled in the UK.

[@ashikajaffar2151]

Yes you should definitely go for intensive physiotherapy in the UK. Speak to your doctor

[@angeldreamzzz9692]

My mom is in the hospital with this right now and it’s day two she can’t walk and I’m scared

[@edclairmont5564]

Your Mom will recover over a few months of treatment. The IVIG transfusions (5) will suppress the virus. Your Mom will need physio to strengthen her muscles in her arms & legs. Slow recovery crosses, wish your Mom a full recovery.

[@anti-popfpv4638]

Mom just told me she was diagnosed. I hope she recovers, isn't looking good though.

[@sellmav]

Which vaccine did she have?

[@tinaw.1593]

How are you doing today

[@cooolway]

It's call Guillain-Barré Syndrome, not Summers

[@gbs-cidpcanada5886]

:) It was a play on words because her diagnosis and treatment only lasted two months over the summer.

[@muhammadkhalifa4181]

Hello

[@anitaward5854]

Hi my name is Anita

[@anitaward5854]

I have Guillain-Barre syndrome ivandale November 6th and I'm still recovering is very hard for me continue to pray for me

[@mlakshmi1487]

@@anitaward5854 how r u anitha

[@margaretnajafi8108]

Hi my grand daughter is diagnosed with GBS and it’s been two weeks and we are all devastated and she is in so much pain. Do you think we have to tell her what’s the name and what she has to expect in the future or not. All of us are shocked she can’t move and she is on tubes. Please give me your suggestions, thank you especially the young ones t

[@brendanashby6624]

Holy crap it's already been 8 months for me and I still can't hardly move

[@josevillagrana571]

I don't know why people go to chiropractors they screw you up more than anything else😂😂😂😂