Holly After GBS - What causes Guillain-Barre Syndrome?
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- Опубликовано: 30 июл 2024
- What causes Guillain-Barre Syndrome?
At the age of 26, Less than 3 weeks after giving birth to her first child, Holly was diagnosed with a rare autoimmune disorder, called Guillain-Barre syndrome. It started with a pain in her neck and a weakness in her legs, and within 12 hours, she could no longer walk. Within 72 hours, she was completely paralyzed and could no longer breathe on her own. She was admitted to the ICU where she spent two and a half months, breathing on a ventilator and fed through a tube in her stomach. When she finally started to recover, she had a long road ahead of her. Once released from the ICU, she started intense physiotherapy where she learned how to use all the muscles in her body again, and eventually how to walk. It was a long four months before she was able to return home to be a mother again, but she has made an almost complete recovery. Holly has since written an inspirational book titled Happily Ever After, about her experience, and the challenges that she faced along the way. She now volunteers with the GBS foundation visiting other GBS patients, and shares her story - at universities, woman conferences, etc. For more information on Holly and what she is up to now, or to purchase her book, visit her blog: www.hollyaftergbs.com
My father survived this when I was a baby. We learned to walk together.
How special! I learned to hold my daughters bottle at the same time as her
That’s so awesome and special!!❤️👍
To look at your husband, I was thinking what a wonderful husband you have. I'm sorry you ended up in a divorce. I am happy for you, your recovery was long and hard but you are a awesome strong woman.
Thank you so much!
I was sorry to hear that also. 😢
OMG! I just read this comment after seeing the wonderful video from the beginning to end and thought what a wonderful man he was! I'm so so so sorry to hear about this. God Bless You and your beautiful baby girl! You have a purpose! You won't be able to know what it is. It will find you! God Bless!
Reading the book now and seen this. I was very sad.
I accidentally came across your story.
It touched me deeply.
I am happy to see you healthy !
Pregnancy was the cause of my GBS. It started around 33 weeks gestation and I was hospitalized for about a month and paralysis plateaued just before my breathing was compromised. Thankfully I was able to deliver a healthy baby at almost 38 weeks via C section and learn to walk again at home with my newborn. Thank you for sharing your story Holly. Learning about other women that had gone through GBS while pregnant or just post pregnancy gave me hope during those dark days. The hospital where I was treated had never seen a case of GBS in a pregnant woman so they had no assurances that the baby or myself would be ok. We are strong women and strong moms
WOW!!! Thank you for sharing your story with me. I love that you and your little one learned to walk together. That is so sweet. Our babies give us so much strength. I am so proud of how far you've come!!!
Same ! I had it just 2 weeks before my due date I had to go through emergency C- section hospitalised for 3 months . I learned to eat walk, talk it’s been hard as a mother that u not just focusing on yourself . I was only thinking for my kids but it’s amazing how mothers can pull ourselves to be strong 💪
Aleah, I ran across your story and am so happy you and your baby are happy and healthy. I was raising my autistic Grandson who is 4 and in February I caught GBS. I'm just now learning to walk. I died 3 times because it paralyzed my breathing. This has been so hard for me. Thank you for sharing your story. God bless you and your family. 🙏☺️
I have MS and had to learn to talk walk eat etc. I understand some what what you went through KEEP FIGHTING AND GIVING OUR HEAVENLY FATHER THE PRAISE YOU ARE COURAGEOUS💞💞💞💞💞💞💞
My uncle passed away from this! You are one Lucky lady God bless you!
I am a nurse and had the opportunity to care for several GBS patients and am amazed at the journey all of my patients had to endure. It was quite scary. I am awe struck watching your journey. You are an amazing person. Sorry that you went through a divorce after all of that. I've been through a divorce and it is by no means fun. You are a strong lady. More power to you.
I had heart surgery and spinal meningitis and while in the hospital contracted GBS In a way I was lucky they were able give me some kind of globulin drip the stopped it at my ankles So only my feet and ankle's were effected That was enough to put me in a wheel chair for a while But to anyone reading this and has GBS do not give up hope With a lot of hard work That js to say Get stress out of your life, eat better and exercise a lot and get the right amount of sleep you can over come this syndrome It has been 5 years since I contracted it I am 73 I am in better shape now than I have ever been I can walk as far and as long as I want, I can swim a half mile in 20 minutes I can put in a full days work get some good sleep and get up and do it again and again It is a down right depressing affliction but never give up you can not only get better you can get to be better than you have ever been
I glad you are ok you been alot you were are frighter why he divorce you
Thank you. I needed your story. I came down in May with GBS. I was numb from under my breast down to my toes. I had the blood transfusion. Now I'm still numb from below my knees to my toes. I had a vein in my left leg fixed for varicose vein. It was the on set for GBS. I've been to Vanderbilt now they are sending me to a DR for neuropathy that can see this I pray.
How are you doing now since you were diagnosed with GBS?
I have followed ur whole story!!! I don't even know anyone w GBS but I am always interested into learning diff things just in case. But u r waayyyy more than an inspiration. Ur are an admiration!!! Not only because of where u have came from, but U NEVER GAVE UP!!! Especially, being a new mom going thru post pardom depression after giving birth and going thru what u experienced!!! I couldn't imagine!!! Keep pushing for u, ur children, ur family and ur followers!!! U R AMAZING!!!
Oh my gosh, thank you so much for your beautiful words!!!!
I got my GBS from a Gallbladder removal surgery that went extremely wrong. The surgeon accidentally cut my common bile duct and didn't catch it. I filled up with poisonous toxins until I was life flighted to Ft. Myers where they opened me completely up to correct and clean my insides. But, unfortunately it was too late. Little did they know recovery from all that was just the tip of the iceberg of what was to come. 3 weeks later I was discharged. 1 week after that my body slowly began to decline. I was 40 yrs old and literally felt like I was 99 yrs old. I would just fall, my legs would cooperate. I had extreme spinal pain. I would go to the ER and they would tell my family it was all in my head. Until one day my body completely gave out and I went unresponsive. Weeks later I woke up in a Sarasota rehab/nursing home. Completely paralyzed from shoulders down I again became extremely ill at the news of my father's passing. Little did I know that this time going to the hospital I would finally be diagnosed with GBS. It has been 3 yrs. I am still not fully recovered. I'm living independently and it's amazing. Not sure my feet or hands will ever fully recover but I am thankful. I walk with a cane now. I'm back driving and enjoying life. I do everything I can to avoid stress, my body just doesn't tolerate it at all. Thank you for sharing your journey. It has truly helped me emensly!🧡
Debbie I am so sorry , you had to go through all that sickness and Drs. Not believing in you. Drs. Now a days don't treat us as good as the old time Drs. They took more time with us and believed in us when we told them are symptoms. I find that Florida Dr's. Are not as good as Drs. In Massachusetts etc.
Debbie so sorry to read you were dealt such an unlucky hand of cards with your surgery - i thought it was naughty and funny when I guzzled 8 chocolates earlier today - I dont think it funny at all now I read what your outcome was from gallbladder surgery - looks like I was meant to read your story - thank you for sharing - I hope things are going better for you medically 🌻
Will pray for you🙏, God is the great physician. Thanks for sharing your story...it will give others hope and let others see how much they have to be thankful for...GOD BLESS YOU🙏✝️
Debbie,.in the Bible it says Jesus will not give u anything difficult, in your life if he think you can't handle it. He must think you are a extra strong person. God bless you!
Reading your story with GBS is tragic and so scary, I am glad you got better too, Please read my comment if you want about my GBS. We are the few who can talk about this and understand. Like you my first husband thought I was faking to get him to stay home with me. (he was cheating on me during this time) So, I get that you got frustrated with someone not helping you, God bless. Take care.
My friend had flu shot. So grateful she is ok now.
I know three people who got the flu shot and got gbs. One did not make it
@@julesth21860 I’m so so sorry.
Your daughter in your walker was the cutest thing ever... So happy your doing well...
Sending Love and Light!! You're a strong woman!!💙🙏🏽
Wow god bless ! I pray for complete healing
I just watched your journey and it brought tears to my eyes !! I am so proud of you for being so strong and not giving up!! God Bless you ❤️😊 !!! ❤️ from 🇨🇦
I am so proud of you. I watched all three videos and would watch more. And tomorrow I'm going to the bookstore and find your book. My prayers are with you and Casey. I have daughters and granddaughter that are your ages. Thank God we haven't had to deal with GBS. My love and best wishes for continuing good health.
Hello! You are a strong amazing woman. I worked as a tech in the ICU for a few years and had patients with gbs. God bless you! Such a scary and horrible ordeal. It has been said to be linked to the flu shot. I will be praying for you. Stay safe and stay healthy!
Thank you so much for your kind words and everything YOU do!
I was told that I can't take the flu shot anymore because I have GBS since May😥
@@debbieknott5660 im praying for you. Sending you the biggest hug ever.
What an amazing lady you are? 🐾🐾 God Bless & Love to All
Wow, you are so amazing for bringing this disease to the forefront, I had no idea about this terrible disease, you're truly amazing, and all the people out there that have suffered with this, God Bless you x
Wow! I came across your recovery video and your story is remarkable! Thank you for sharing and enlightening us. I struggle with stress alot and you have inspired me to make changes to reduce and prevent my stress. Thank you!♡ Sending lots of prayers to you and your family.
Awe thank you for your kind words. I am glad my story helped you! Sending you love and strength!
I'm so happy for your recovery! I am sorry to hear your marriage didn't work out. I know you both must've went through so much. I have to be honest I've NEVER heard of GBS, I do get the flu shot EVERY year, as well as cortisone injections in both hips after being diagnosed with Calcific Tendinitis. After hearing you explain the triggers for GBS, I'm terrified to get these Anymore! Stress is also a factor. I'll have to think seriously about this now. On a different note, I'm so happy that you're moving forward with your fiance'. Wish you the best!
Bless your spirit for still giving to others on this platform 🌻
You are so sweet! Thank you for your kind words.
Oh I see so many things can trigger. Scary. .. . We need to keep an eye of all our intakes. Thanks for the info.
Sorry you had to go through the pain I couldn't hardly watch that, glad you recovered and doing better.
MAY GOD CONTINÚE BLESSING YOU YOU HAVE COME A LONG WAY YOUR INFORMATION IS VERY HELPFUL FOR MANY PEOPLE, HOPE YOU CAN CONTINUE DOING THIS I TRULLY FOUND IT VERY INTERESTING GOD BLESS MY PRAYERS ARE WITH YOU AND YOUR FAMILY
Your inner strength is uplifting. I had GBS back in 1979 when I was 27. My bout was slightly different than yours but I did see myself in your recovery process.
Today you'd never know I had it.
God love ya kiddo. You are amazing.
Awe, thank you for sharing your story with me!
I had gbs in 1992 at the age of 22 after having a miscarriage I was 5 month pregnant
My best friend's 2/year old son suffered from this. It was sporadic that he got it at such a young age. It was such a scary, scary time. I love that you were so willing and brave to share your story and keeping us up with updates. My best friend had no clue what this was or what to expect. Her son was misdiagnosed so many times. A couple Dr's even told her that it was because she vaccinated her son about a week before this being triggered.(not in a nice way, like a judgy wag," She felt so so guilty. I love this because now women like my best friend who in sporadic cases have to watch their minor children, sisters, mother, grandmothers, brothers, dads, etc.. you get my point! Lol, thanks again for sharing this. You are beyond strong and beautiful, mama! Keel up the excellent recovery
Thank you so much for your kind words! How is your best friends son doing now? I hope he made a full recovery!
A dear friend of mine has this it entered her body quite a few years ago, and still she fights everyday, she's a special friend who hit it head on, and never gave up. To her I say well done well done
I just bought your book, very much looking forward to reading about your incredible journey! Keep up the good work! ❤️
Thank you so much for your lovely words. I hope you enjoy reading my book!
Thank you! First time I heard of this condition. Stubbled on your video. Very well explained.
Hi Holly, so great to see you looking so well! I had GBS back in 2000 at age 30, when my youngest was 9 months old. I had previously had a short lived diarrhoea causing GI infection and then developed an incredibly sore throat which I still had at the time I was admitted to hospital. I eventually fully recovered although my balance is still a bit off and when I'm really tired my toes go numb! Interestingly in 2015 I was involved in an extremely stressful situation which triggered another autoimmune response which I still suffer with, mixed connective tissue disease.
Wow. I knew about this disease but didn't realize it can be so devastating. I watched the video of your journey and it was simply amazing. It's wonderful what determination can do for us. Thank you for sharing your story and God Bless you and your family. And your baby is such a cutie pie.
Thank you so much for your kind words!
Reading all of these comments honestly does make me feel less alone in this. I had unfortunately never heard of GBS so I had no idea what was happening to me (losing control of limbs, tiredness, complete loss of sensation everywhere ect and so much more.
Girllllllll, you are amazing!
So happy you recovered ❤️🤗💕
Welcome back. And thank you for the info on vaccines. And GBS.
You're welcome!! :)
Glad your doing great. God bless you and your family always.
Your story is so insane and I personally was very moved God bless you and your family.
Thank you so much!
I’m glad you’re ok. Thanks for sharing ❤️
Thank you!
Such a strong woman! Good luck to you in the future!
Thank you so much!
Holly You are so beautiful. The outcome of your story just made my day!! It's so cool to see how well your doing. I am going to buy your book. Take care pretty lady 🤗🎅🎄🤶.
Thank you so much!!
I just finished reading your book, Happy Ever After. It was so inspiring , you are such a strong beautiful person , I wish you all the very best.
Thank you !!!
Im so Happy for you!
You story is amazing your since a warrior
Thank you for sharing! I pray God continues to bless and keep you and your family!
Thank you! You too!
A friend of mine passed last month. He had a flare up we believe and was alone. They didn't find him for two weeks. I wish I would have known how bad it was. I am so happy you recovered
You've come along way girl
Thank you so much!
You are an amazing inspiring beautiful lady. I wish you health and happiness in all your endeavour’s. Godbless you. ❤️
Wow thank u for your testimony I'm so so happy you made a complete recovery and your happy.👍♥️♥️😊
Thank you so much!
Blessings for you to stay GBS free
You are an amazing person. I admire you and you've inspired me to keep pushing forward. 💜
Thank you so much! You've got this!
I did not have GBS I had something called ADEM it was unreal started with a 29 day coma coming out paralyzed from the neck down in a wheel chair a year 2 years and 9 months until I walked again. Praise God I went in 4 years after and had identical twins that are turning 10 we just never know what we will be given to deal with I am grateful I serve a REAL GOD who saves and restores!
I am also now separated from my husband of 17 years who stood by me my whole illness with ADEM as well the twins father it was very hard on our marriage maybe my handicaps I now have even more so! I am not looking for another relationship though to heartbreaking!
I was hit with GBS in November 2011 (on my birthday no less) and spent 3 months into 2012 almost having the life crushed out of me. I then spent the next 5 months learning to walk again. I lost my 23 year career as an architect, I lost my 20 year marriage and lost every dime I had in the bank. Its now 2019 and Im still in severe chronic pain every single day of my life. Over the counter pain meds are useless and non-narcotics dont work. And the worst part ..out of the dozens of people that I had called family and friends, a grand total of two came to see me while I was in the hospital - 2 people, thats all ..I wouldn't wish the nightmare of GBS on anyone.
Vince Kissinger your story is so upsetting. I hope you are getting back to normal and finding some kind of support so you are not alone. You shouldn’t have been left alone during your recovery. I feel so bad for u!! ♥️♥️ keep strong♥️♥️
I am a GBS survivor. Sorry that your family & friends abandoned you. As for your pain, have you heard about using an infrared red light LED 633-810 nm pad? Or a PEMF pad? or specific frequency microcurrent therapy? or hemp or cbd oil or copaiba oil? Your pain threshold could be low if your vitamin D level is low. Over the counter pain meds only hurt you liver & stomach lining.
Hi Holly, I had acute GBS in 1989 after having had an immunization in grade 11, and catching a cold that turned into bronchitis. My recovery took approximately 11 months, from ventilation to learning how to do Everything again. What a journey! Your hospitalization video captures really brought me right back to "ground zero" and I am so happy that your family was able to capture those moments for you. It's challenging to describe the experience but you do it so very well and I applaud you!
I'm in the process of describing my own battle, and it was such a pleasure to find you and your story. I will admit, I'd shoved that part of my life into the background for so long now, but your video reminded me of how truly strong and resilient we really are! It's too easy to take that for granted and minimize it, but seeing and remembering the utter agony is both inspiring and bittersweet.
Love and hugs from a fellow Canadian in BC
Amazing! Thank you for sharing this. Now I am able to look back on what I overcame with respect even if it was so awful as it made me who I am. Good luck writing yours! Where in BC are you? I’m in Edmonton :)
@@hollyaftergbs I'm in Maple Ridge.
I'm sorry to hear that.. I don't trust ANY vaccines at this point 😒
I want to thank you cause watching your videos in the hospital gave me hope. I think mine was caused by extreme stress and a stomach virus. They discharged me just a few days later thinking it was in my head. I woke up 3 days later BLIND I had PRES and almost died then developed severe septic shock on top of gbs and I’m still recovering but taking it day by day. Thank you for sharing your story and informing people on this. ❤️❤️❤️🐢🐢
You are so welcome. Im glad you were able to find my videos and I hope they helped. Praying you are on the road to recovery and doing much better. Taking things day by day is the best way to deal with this. And don't forget to celebrate every win!
@@hollyaftergbs thank you so much for responding. I also had this blanket in the hospital I had made for my daughter with pictures of her and I on it. I couldn’t even give her a hug for four months cause of Covid restrictions. I used your video and the blanket with my daughter on it for motivation. It’s so difficult and the pain was horrible but I’m able to kinda walk. I have severe polyneuropathy and foot drop so I fall a lot. Do you have any advice for regaining balance? It feels like I’m walking against the wind. Or is there any resources available to us?
So happy you are doing well.
Thank you! :)
Thanks for Explaining and all the info..
My pleasure!
Praise God, that you have a Full Recovery, God will Redeemed what had been missing..
My Mom had developed GBS in 1973 when we were on vacation in Florida. My brothers and I were young and my Dad had driven us all for our family vacation. She became very weak and was not able to get out of the car at the medical clinic. The doc came out to the car to examine her and sent her directly to the hospital. We never knew what caused it, if she had been sick before or vaccines or whatever. We had to leave her there and drive all the way back home without her. It was months before she came home and had to go to PT to learn to walk again. Very scary experience and always have wondered if any of us would get it. You are an amazing woman! I love to see your videos and wish you much health and happiness!!💞
Wow what a terrifying experience. I dont know why but it seems to be very common that people get GBS on a vacations. I hope your mom is doing so much better now!
@@hollyaftergbs
That was a very long time ago when no one actually knew what it was. My Mom was a very tough lady! Unfortunately, she passed in 2002, from breast cancer, at 77 years old. And I miss her terribly, still to this day. Thank you so much for replying to my comment. You are a very tough woman as well! Keep doing what you do, and stay healthy!! Thanks so much for sharing your story! 💞💞
Thank you so much for explaining what happened and why. It helps to bring awareness!!! You look so happy and relaxed now !!! I’m glad because you certainly deserve it ! How is your gorgeous daughter ? Great, I’m sure ! Anyways, thanks you again sweet girl and take care ! ❤️
Thank you so much! She is doing amazing! You can catch up with me on Instagram as holly after Gbs !
Im am so sorry to hear that all you had been through, to have your marriage end. Happy you have found someone else. ❤❤❤
You are a AMAZING WOMAN!!!!
God bless you and your family
You are one brave lady and your husband a very brave guy God bless all three of you! Sorry to hear about your divorce but glad you are happy now!
Thank you so much!
I too have GBS. I’m in my 9th month now and still have excruciating pain. I was out with my best friend and we were having a great time and having dinner and drinks and the next day I was completely paralyzed. My friend had to rush me to the hospital where I was diagnosed… and yes thinking back on it, I started having tingling in my feet and legs but ignored it but I had had lots of shots done and Radio Frequency Denervation performed on my back and I think that is what triggered it and/or it could have been when I had an infection of some thing called C diff, so I probably will never really know.
So glad that you have recovered!
I am so sorry to hear this. You are in my thoughts and prayers, and I am praying you make a full recovery as well! If you haven't joined any GBS support groups there's quite a few on Facebook. You are not alone and in time you will get there. Sending you all my love and strength!
My brother's GBS was triggered by cortisone shots in his feet. He had a paralytic reaction that same day.
Terrible is he ok now
Wow...your story is amazing, I always tell people getting pregnant is a life or death situation...I have two kids and I had both c-sections so what happened to you could have happened to me...you are a strong person and I’m glad your doing great.❤️
Thank you sweetheart God bless you
Sad to know that you got divorced but as long as you are happy cause that's all matters, happiness. life is too short to be in an unhappy situation. Good luck with everything and I want to assure you that God of the Universe will protect you and only Good will happen to you from now on....
I worked in a long-term facility for ventilator-dependent patients. We always had patients, who were victims of GBS. Every one of my GBS patients, who remained paralyzed and ventilator dependent for the rest of their live had it triggered by the flu shot. This is not speculation. The medical records actually listed the flu shot as the trigger. Most of them remained paralyzed from the neck or shoulders down. They could never come off the vent. They could not tolerate Passy-Muirs, so they could never speak again. They remained in long-term care ventilator units, until they died. While the vaccine warnings now include it as a rare side effect, many people still poo poo the idea and insist that it is just a coincidental thing. They say that those folks would have gotten GBS anyway. I don't believe that. The manufacturers of the vaccine could remove the component that is responsible; however, because the number of people, who suffer this side effect is low in the scheme of things, it is not cost effective for them to do so. And since the flu vaccine has never once been the right mix for whatever the current flu variant is, why would anyone want to risk it? One of our beloved, local physicians got GBS (flu shot) and never fully recovered, but he did make it his mission to educate the community. Although unable to continue his practice, he kept his office and made frequent visits in his motorized chair. He saw a former patient in the waiting room with her family and stopped to chat. Her current doctors thought it was just college burn out, general malaise, a virus--nothing to worry about. He asked a few questions and then looked at her parents and said, "Get her to the hospital immediately. She has Guillain-Barre." Within hours, she was unable to breathe on her own. He saved her life. A good way to remember it...G-B affects Ground to Brain with order of symptoms. Thankfully, with quick diagnosis and treatment, young, fit people can recover. I am so glad that you did!
Thank you! You are right that vaccines can triggger GBS, though it didn’t in my case as I didn’t have any vaccines prior.
If you’re interested, I’d love for you to check out my book, Life Support: Surviving Guillain-Barre Syndrome on Amazon to bring more awareness to the medical field on what GBS is and what it’s like to go through!
You are a strong woman! Thank you for sharing your story. You have a beautiful daughter. Thank you and God bless you.🌝♥️
Awe, Thank you so much! :)
@@hollyaftergbs I saw your
whole story, when you were so very sick, with your baby on your lap. The picture just broke my heart. So many men are weak and can't handle prolonged illness. It's his loss. You are so beautiful and blessed. I'm so glad that you were able to recover to the point where you are able to see her grow up. To be her Mom and live your lives. May the Lord continue to bless you and your beautiful child. Thank you for sharing your story, Holly. 😊♥️
So happy you're alright
Thank you :)
Mam you are sooo blessed
My brother had GBS several years back I realized then how serious it is. Still today his hands don't work like they use to. But he's doing good today.
yes issues in hands and feet are common after GBS. Glad to hear he is doing better.
Ive seen a few patients with GBS caused by weight loss surgery or gastric bi pass surgery. Its always devastating no matter how or why u get it. 💙💙
That is so true. Thank you for everything you do!
Hi. I had GBS at 2016. I had multiple pharyngitis beforehand.
I have GBS That was onset from having a vein on my leg fixed as an out patient. It ached all the time so I found a DR in Birmingham Alabama that said he could fix it. So I had 1 vein fixed, then went back for the main problem vein to be fixed. It's the one that caused GBS. I've had test run blood transfusion also. Saw another Dr. He then sent me for more test at Vanderbilt in Tennessee. Now I have to go to a neurologist. This also affected my mind. It's very scary. Hoping the other Dr. Can fix this.
I’m so sorry to hear of your divorce. Life doesn’t always go as we planned, does it? You have your beautiful daughter together, and forever be thankful for that...🌹
Holly is beautiful. God bless you.
You are so kind
My dad had gbs. From a motorcycle accident.. He is gbs free now . he had it. Four years ago . he has a neurologist he has to see . he has some time's residual side effects. Tingling in his legs . do you have any side effects. If you don't mind me asking .
You are such a strong inspiring women how old is your baby girl now?
She will be 10 in a few more weeks.
God you r a great woman n I'm so sorry to hear your marriage didn't make it but so glad your a strong woman n the your baby girl is so beautiful n presious. God I cried when I seen the trials see went thru n thought n so many of us complain about nothing compared to this awfull tragedy you n family went thru.
Hi, Holly, Thank you so much for sharing your experience and what you've continued to learn with us. Hopefully this will be a way to bring awareness and educate people about GBS.
I have a question. Is there any way to know if someone is more susceptible to getting GBS? If so, what might some of those factors be? For example; if someone is already diagnosed with an autoimmune disorder such as Fibromyalgia or Lupus, are they at a higher risk? Also, are there any tests doctors can do to tell you that you could have it?
It seems like GBS arrives so suddenly with only a potential trigger to help determine how you got it. I guess I'm wondering if there are currently any preventative measures or have they developed any early detection measures that could possibly help? Thank you again for sharing what you have been through. I hope that much more research can be done to help with and/or prevent GBS all together.
🤷🏼♀️ Hello, Holly?!
Vaccine reaction, it's on the manufacturers insert
Autoimmune conditions are much more likely to be caused by infections than by vaccinations. Epstein Barr virus, cytomegalovirus and Campylobacter infection are known to trigger GBS. Strep infections cause rheumatic heart disease. I developed an autoimmune condition after having a cold.
I believe I had a mild case after surgery. Felt like my legs wouldn’t cooperate, very off balance, weak, numbness and tingling in various parts of my body. Seemed to go away after a couple months but sometimes I still feel strange even 8 months later.
My 10 year old daughter was diagnosed with GBS 8/29. She is in pediatric ICU on a ventilator. So terrifying for all of us. She was so sick starting 8/15 which the pediatrician just said it was a virus. They only ran strep test which was negative but I told she was having migraine headaches, leg pains, blurry vision, and seeing dots, on and off fever, vomiting just bile and diarrhea and horrible cough. . I begged them to run blood test for other bacteria but after visit 2 her fever went away and they just sent her home. We ended up in ER a day later for jaundice which they treated with IV. While on trip to Hershey Park PA her head aches and fever returned. Next day 8/27 she woke up with body stiffness everywhere and could not urinate or eat / drink we took her back to ER at which point she was in so much pain in her thighs and head. They catheterized her and gave her enema / stool soften. She was sent home. 8/28 she could not get out of bed, intense thigh and head pain and then her legs gave in. . My husband Carried her back ER where further blood test results were normal as well as ultrasound. Hospital transferred her by ambulance to NY Presbyterian where they swab her nose and found “mycoplasma pneumonia”;and then did spinal-tap and found elevated proteins. They admitted her, gave her antibiotics, painkillers and started IVIG drips for 3 days. Then they gave her steroids drips 5 days and feeding tube. This has been so hard on our family. When in hospital we communicate using a board. My husband and I never leave her alone. We switch shifts between the hospital and taking care of our 13 Yo at home. Goal is to get her off ventilator. I am just so angry this happened. Are there more recovery studies on children with this and wondering if any studies out there identify environmental factors too.
My heart goes out to you, I got GBS when I was about to turn twelve and to see how it affected my family was heart breaking, I was very lucky and didn't have to go into a ventilator, I was paralyzed, the only thing I could move was from the neck up, when I read you begged for more test reminded me of my mother crying begging the neurologist to put me in physical therapy, the neurologist told my mother I would be back to normal in 7 weeks, it's been around 18 years since that day and I am not back to normal, luckily she got through to him, thanks to that I got back to walking. Your daughter is very lucky to have great parents such as yourselves, your love and care will help her recover (this is pretty obvious but it needs to be said), this is one hell of a struggle, specially for your daughter, seeing this "thing" take hold of your life as a child is one of the scariest things you could imagine. I hope your daughter gets off the ventilator soon, that will probably be the biggest hurdle, stay positive, as hard as that might seem at times, this is when she needs both of you at your strongest. Take care.
I’m praying she’s doing well now 🙏🏾❤️
My GBS diagnosis was late last summer soon after I finished chemotherapy for uterine cancer. I had two recent flare ups--April and May. I really struggle to not let the pain and inability to walk without a walker get me down.
Sending you love and strength!
I ended up in NCIU 4 weeks after I had my daughter via c section. C section is my 1st surgery, and I also had tdap vaccine on the delivery day. It took 2 weeks to finally found out that I was sick because of GBS. Which triggered it...I don’t know...but when I was sick and didn’t know what happened to me...I could felt it in my heart that my body was working against me.
My was triggered by many sinus infections.
How are you and baby doing now?
my X- husband got GBS after his first corona vaccination , thank you for your very interesting video
So sorry to hear that, hope he is on the road to recovery now xoxo
@@hollyaftergbs He is now out od ICU after 62 days but is still unable to speak and has restricted movement, thank you for your recovery wishes
I recently contracted GBS. Being a retired RN after 44 years of experience, I only came across this in 2 patients in the ICU during the early years of my career.
13 months ago I came down with a severe case of Micro Cystic Colitis . This was complicated by a kidney stone, and multiple UTI’s as I lost control of my bowels. None of the meds helped. My GI Dr was almost as frustrated as I was. He finally put me on steroids for 4 months which were horrible and didn’t seem to show improvement. When I called the office after 3 months on the steroids telling them stool was basically just running out of me every time I stood up. I was basically homebound this hole time. My GI ordered another Stool culture which resulted in C-Diff bacteria, which can be fatal if not treated. I was on a heavy duty antibiotic for 6 weeks. Things very slowly started to improve, but my activity level was low. I tried to start walking short distances, but some issues developed and I had to stop. Fast forward to July 2022. I developed a very severe ache, and numbness in my left leg during the night. If I took Tylenol I could usually get back to sleep. This lasted a few weeks the also the lower part of my right leg was affected. During the day things seemed ok, but standing longer than a few minutes was painful.
I was on vacation with my boyfriend when this suddenly happened. It was the first day of a 6 day vacation, looking back, we should’ve come home right away, but I waited, knowing what it probably was and taking care to mark the progression as I didn’t want my respiratory organs affected. I could walk like a Penguin, but still fell several times. Upon arrival at home my boyfriend took me to the ER of a close hospital. They did many tests before saying that I needed to transfer to the larger University Hospital for more support.
After a Neurologist evaluated me I was started on 5 days of IVIG.
I am 5 weeks post and don’t notice a huge improvement. I’m trying to get outpatient Pt, without any luck so far. I may need a second dose of IVIG, according to my Neurologist. I am praying for a full recovery, but realizes I have a long way to go.
Thank you for letting me share my story!😊
Thank you for sharing !!! Sending you strength and love to overcome this! You are stronger than you know, always remember that.
Thank you for sharing. It will be seven years on my birthday Friday November 14th when I was working as a caterer. I mentioned to a co-worker about tingling in my foot. I worked overtime the next week in excruciating pain. I went to my hip replacement surgeon(I was 41) thinking the other one was going on me. Got a steroid shot. Nothing. Finally, I saw a neurologist. Within 3 days I started my first IVIG infusion. I just recently learned that it is axonal and my nerves will never heal back.
Btw, luckily, it was caught before it got past my legs.
How are you doing now?
After healing from broken bones due to numbness, I am deemed disabled as I qualified for a CADI waver (I am still learning what that intails). I can walk. There is a lot that I can't do due to lack of balance. I start up PT again soon to work on that. It will be a lifelong challenge. I'll get through it somehow. I'm a tough broad. Thank you. That was kind of you to ask.
Have you received the COVID shot because I’m very hesitant to get the shot because like yourself I had GBS years ago what’s your opinion on this thanks for the information
I recently had the vaccine after a lot of going back and forth. There are risks but because I was ventilated I decided Covid would be worse for me. I had no issues.
Do you have a negative blood type?
I was diagnosed when I was 11 through a spinal tap. They think I got my GBS from a cold. My body fought off the virus and instead of my antibodies going dormant, they didn't stop fighting and since there was no virus to kill, they attacked my muscles, causing the weakness in my arms and legs. Drs told me my antibodies kept multiplying and they did 5 days of IVig. After years of getting IVig, and multiple relapses, they reclassified me with CIDP. I'm 37, with 3 children, no problems during or after pregnancy (thank goodness) but I still get IVig every 12 weeks currently. My GBS didn't affect my upper respiratory, so I got lucky with that. I don't know if I could go off of IVig and not relapse. Scary to think of with 3 kids. Did you get IVig or plasma exchange while you were in the hospital?
Yes I had both in the hospital. Didn’t do much at the time but helped in the long runSounds like you have the chronic version. Perhaps you will go in remission one, I have heard of that!
Good luck for you and your family
GBS is hell diagnosis 9.12.2015 . My advice is to get all the information as possible ,keep on talking to the health professionals .Am still struggling on crutches limited mobility, balance problems, hand tremors, muscle wastage, fasciculations in quads.
Last 14 months total struggle, kept on at my Neurologist! Help me! Another EMG test and another diagnosis of MNN ,,so waiting for IVIG treatment.
Seek help with any mental health issues arising from GBS GBS cidp.
I hope you're doin better ❤
I am 25 weeks pregnant. I know I am supposed to get the Tdap vaccine but it’s says in the paperwork GBS is known to be caused by that vaccine approximately 6 weeks after vaccination. Do you get the Tdap vaccine? It recommend to all healthy pregnant women. If yes what week did you get it?
i was vaccine injured by TDap and was bedridden for over 20 years!
I got GBS 5 1/2 Years ago when I was 57 years old, had the flu for 4 days and then became weak went to the hospital twice they sent me home and said that I still have the flu. Went and seen my DR. and sent to HSC In Winnipeg Mb. were I was the for 4 months. I told the staff at rehab that I will walk out of this rehab and I did. I not 100% but 80% . I guess the question I have is what are the thoughts on the vaccine for covid with having GBS? Stay safe everyone and stay strong!
I am so glad to hear you were able to walk out of the rehab facitility. How are you feeling now? This is a question I get quite a bit, so please take a moment to watch this video:
ruclips.net/video/2Ky6zbdnSEI/видео.html
I’ve read that GBS is a side effect of the FLU SHOT ... actually it’s written on the insert as a side effect
My sister and my father in_law got it ...my sister flushot my father in law polio vaccine OBVIOUSLY VACCINES
My husband got GB. It was several weeks after a flu shot. However, we learned years later that flu vaccine can cause this. Hubby was very healthy before he got it, no respiratory illness, no flu, or anything like it. He recovered after several days in hosp. The next step was a respirator, but thankfully the paralysis stopped in his lower abdomen! It was out tenth wedding Anniv. when he went to the hospital. We’ve been married now for 43 years! So blessed.
It’s about 1 per million people with the vaccine.
@@jmpattillo interesting that during this same time when my husband got it- a family friend of ours who was an MD( two specialities) he was a neurologist and Vascular Surgeon had three male patients he was seeing all with GB, all had flu shot. Two were same age range as my husband , the other approx 10 yrs older. Two were bedridden and paralyzed, the other in a wheelchair with his legs still paralyzed. We were on west coast they were on east coast. More ppl have gotten it than your stats.
@@karencronin9502 I’m very sorry for what you have gone through. With a due respect, what you are saying are anecdotes about yours and others experiences with the disease. Anecdotes are powerful communicators of the real human cost of an illness, but they do not help us put realistic numbers to risks. Only careful scientific study can do that. Based on current scientific evidence the risk on GBS from a flu vaccine is about one or two additional GBS cases per million flu vaccines. In fact, the data suggests that having a case of the flu is more likely than to trigger GBS than the flu vaccine. However, this is still extremely rare.
I had GBS 3 years ago and I'm not fully recovered. I had a bad sore throat for 2 or 3 days around 3 weeks before GBS occurred. I'd also traveled to tenerife and gotten bitten by a mosquito at the same time as I had the sore throat so zika virus could also have been a trigger for me? I still travel to tenerife when I'm well enough to because I never know when my symptoms will flare up and prevent me from travelling. Currently I'm housebound again and off work with chronic fatigue :(
Very sorry to hear this. Sending my best wishes.
God bless you....was homebound for a year . Have much compassion for you