I contracted GBS in April 2022 and had total paralysis. Mine started with numbness in my fingers and toes. Went to the emergency room and was told I had a pinched nerve. In less than 24 hours I could not hardy move or speak. My daughter in law came and took me to Mercy hospital in OKC, three hours away. By the time we got there I was in total collapse. They knew exactly what I had and started treatment. I don’t remember much after that, but I thought I was going to die. I have not fully recovered yet but the doctor says it takes time. It has been a year and a half now and I still have a few problems, but I thank the lord for each new day.
I have the same problem, it’s bem 18 months, I have weakness on my left ankle. I talked to many people, they all say 2 years at least !! Don’t give up and god bless you 💙
It is always develop that fast? My mom had it but I can’t remember how long it took for her to actually full developed of the GBS. I am starting some tingling, burning in all my skin, itching. I have had 6 days like this. I don’t know if it is anxiety
Thank you for joining us. We were a bit delayed for some life reasons but we finally added the recovery part of Holly’s story to her sequence. Mentioning in case it’s helpful for you and/or your sister. We’re rooting for your sister’s continued recovery 💛
In 1978 I had this problem!!!! As a child at the time "" but miraculously I over came with my Lord Christ Jesus with me "" now I'm 56 and still going 💪keep the faith ""
Its differant for everyone i contracted this on may 17 2023 3 months in hospital and therapy now 6.5 at home just starting to walk short distances unassisted feels so good i pray for all who are affected by this hang in there there is light at the end of the tunnel its a rough ride but dont give up have faith in the lord and keep going
I don't usually complain, ESPECIALLY not publicly to random strangers. I can't respond to evenyone. Whatever I say here will take longer than you could imagine. I still don't Have the manual dexterity for many things espetially typing (could barely type before) I wish i could. Some more interaction with people might help with state of mind/depresion. It's not unusual for me to go weeks at a time without talking to anyone. I moved far away a month before I contracted GBS. I don't know anyone close to me. I don't know is what it is. Best wishes to everyone. I appreciate the supportive comments. I wish I could respond to everyone. It would take me a year to type all that. This took me half hour🙁 ✌Peace (does that even still mean peace?) BTW I believe we're all much more alike than some people might want us to believe. Lets try to find the things we agree on instead of continuing to argue with and belittling each other.
@@rohanweerasuriya956 I had GBS is 2011 and I was just a kid, to this day I still have really bad nerve pain in my hips mostly and also in my thighs and knees. As far as regaining strength in my legs it took about 2-3 years (also the amount of time it took for my reflexes to return). But man, the nerve pain is still going, for me it will happen about once a month and the pain can last for a day to a week and is more intense when it is cold outside. Best way to stop the pain for me is either Tylenol and a heating pad. The way my pain is is almost like a period but worse 😅🥲
Hi Frank, we’re so sorry to hear that you’re dealing with these symptoms. Since we are not medical doctors/neurologists or physical therapists here, the most responsible thing we can do is to highly encourage you to report your symptoms to these specialists to receive the treatment and recommendations that best suit you.
I suffered badly from Guillain Barre Syndrome it started on 14th December 1999, I spent 18 months in a hospital bed before I could even start to learn how to walk again. The myelin sheaf on my nearves never grew back properly leaving my the nerves exposed especially in my joints mainly knees and ankles exposed, this causes tremendous pain but also I cannot control my body temperature anymore. All they do is give me strong opioid pain killers that work to a point but I am still in constant pain. I am alone with no family or friends now turning 60 the age is just making the pain worse, I cannot sleep and no one really understands what I am going through. Yes I had a bad case of flu the year before my conclusion is that the flu virus gets into the fatty myelin sheaf then spreads until your immune system notices it then starts attacking the virus but also damages your nervous system. I cannot find a doctor who can tell me if this is a plausible reason for the cause of Guillain Barre Syndrome.
While we are not medical experts and cannot provide any answers about the cause of GBS, we're so sorry that you've been left with so much pain in the wake of what sounds like a pretty bad case of GBS! If there is anything we have learned from Holly, it's that there are great people and organizations advocating for those suffering from GBS, and they're deeply needed since it's quite rare and many doctors have a lot to learn about this syndrome. May we ask if you've been able to connect with other GBS survivors or organizations that can help to point you to helpful resources? We just wish more relief for you! Sending you so much 💛
Makes perfect sense! Our medical schools don't focus on treating the causes of most diseases but just the symptoms and progression , unfortunately, so you have to do your own research
I currently have Gbs I was diagnosed the end of 2019 I am on a ventilator and I can’t walk and live in facility I don’t know how I got this way I just kept falling and it attacked my body Ivery quickly I don’t have any support 😢 and si don’t know how or when I am going to get better I was incubated and then put on a trache I am very weak and I don’t see any progress yet this is very scary 😢
As a fellow sufferer of auto immune disease ( narcolepsy T1 w/ cataplexy and diabetes T2 ), I share your desperate frustration. Quite often, I break down and feel like yelling at God to stop this game of killing me slowly. To get on with it. Get friends who understand and become a member of a support group that meets up via video chat ( it's 2023, after all ). Human interaction is a necessity as one can't mend ones mind alone. I pray you find some peace of mind. Find some way of compartmenting the pain, and start living. I know my pain is much less than yours. My intentions are good, and I sincerely pray for you.
I'm so sorry you had to deal with this and am glad you have recovered. I have a question... did you have any pain in the legs as they were numb ? Did you have any lightheadedness and or coordination issues ?
It actually started with numbness in my thighs. Which is a little unusual. Most people notice it in their digits or the outer extremities first. I had no clues what was going on. I thought it might have been something to do with always carrying my keys in my front pockets. (My keychain has a lot of keys on it;) Thought it was keys poking me. One day I woke up and couldn't move. I couldn't get out of bed.
I was 20 years old and was lying in bed with the most unbearable pain in my legs I later learned that it was the virus attacking the nurses my coordination was so bad I trued stepping off a kerb and collapsed in a heap in the road It was probably one of the most terrifying experiences of my life I had a period and I didn’t know as I didn’t have the sensation of pain or feeling even after all this time I still have residual weakness in feet and hands I thought I was never going to walk again Determination plays a hug e part of getting better sending love to all that are unwell at the moment you will be ok ❤
I am in this alone. I got GBS. I rehabbed to the point of being “functional” again. Then I was told everything will get better on its own from here. It’s been almost two years and I’m not much better than I was when the treatment stopped. Nobody really listens. Everyone just keeps telling me don’t worry sometimes it takes a long time. So. Yeah some of us are in this alone!! Don’t go around saying it’s all rainbows, butterflies, and happy endings. It’s not
Sometimes it’s just really hard. I’m so sorry that this has been your experience. When we say you’re not alone, part of what we mean is that there are others going through similar things alongside you in this world. It’s just a little reminder because it can feel so hard when we look around us and the people we see often seem to have an easier time. But that’s never the whole truth. Anyway, we’re here and we’re sending you 💛
Ha!!! I Thought there was a bunch of replys to my comment. It was more comments under your reply.😂 I completely agree wit you. You never know what someone else is going through. Also, I don't usually go all pity party on random strangers. I was having a particularly bad day. I apologize. It seams you do some people a lot of good. The world is a better place with homest caring people in it. @@chroniclove
Hello Earth to Robin 😂 I am completely alone all my family abandoned me soon as they found out that I had breast cancer they didn't even want to share the apartment with. They were afraid that they would catch.... How ignorant 🤣😂 so now I'm in El Paso Texas alone dealing with my breast cancer 😭😭 I've never smoked and I've never drink and I've never done drugs, 😾😾😾😾😾😾
Robin here, right with you! On earth (I think!) I want to re-share the same reply from a similar comment that you posted on a different video because I really care that you see our response!... That’s tough. If they can’t give you the support you need, there are incredible groups and resources where you can find your people both virtually and in person. Support groups, Facebook groups, nonprofits, etc. Find the people who will support you. Build your chosen family. You deserve it. Breast cancer is hard enough! Sending you 💛
I feel very bad for you; I'm sorry this is happening. If your people are so stupid to believe that breast cancer is contagious, you're better off without them in your life.
I’m sorry you going trough this I’ll keep you in my prayers that God will give you the victory over cancer and I pray the while you go through this you can experience the love of God.
My friends contracted this after the vaccine... i never realised how awful this is for him. He comes to me for regular massage reiki reflecologu cupping whatever i can do to help
What a terryfying story! To think I am making a fuss about a failed root canal treatment. Thats nothing compared to this. Interesting point about trusting doctors and your instincts. Where there is a choice, I believe the instincts are more often right than the doctor. I once had stomach cramps vomiting internitent pain. Various doctors just thought I had flatulence. I thought I had appendicitis. At the last moment an older doctor (the first after FOUR other doctors)diagnosed me with acute appendicitis. A point worth thinking about: the doctor who made the correct diagnosis actually touched me instead of just looking asking and looking at a compter screen.Anyway, when there is a conflict between doctor and instinct dont let yourminstinct be overwhelmed by the presitge of a health professional, professionals are often wrong.
I contracted GBS in April 2022 and had total paralysis. Mine started with numbness in my fingers and toes. Went to the emergency room and was told I had a pinched nerve. In less than 24 hours I could not hardy move or speak. My daughter in law came and took me to Mercy hospital in OKC, three hours away. By the time we got there I was in total collapse. They knew exactly what I had and started treatment. I don’t remember much after that, but I thought I was going to die. I have not fully recovered yet but the doctor says it takes time. It has been a year and a half now and I still have a few problems, but I thank the lord for each new day.
So scary!! We are rooting for you and your continued recovery! We’re sending you lots of 💛
I have the same problem, it’s bem 18 months, I have weakness on my left ankle.
I talked to many people, they all say 2 years at least !!
Don’t give up and god bless you 💙
It is always develop that fast? My mom had it but I can’t remember how long it took for her to actually full developed of the GBS. I am starting some tingling, burning in all my skin, itching. I have had 6 days like this. I don’t know if it is anxiety
Interesting thanks for sharing hope all of you recovered my twin sister still has this. It's been 2 yrs now but she gets strong everyday
Thank you for joining us. We were a bit delayed for some life reasons but we finally added the recovery part of Holly’s story to her sequence. Mentioning in case it’s helpful for you and/or your sister. We’re rooting for your sister’s continued recovery 💛
In 1978 I had this problem!!!! As a child at the time "" but miraculously I over came with my Lord Christ Jesus with me "" now I'm 56 and still going 💪keep the faith ""
I just got diagnosed with this…in ICU
We are so sorry that you’re dealing with this. Sending you love and healing wishes 💛
Its differant for everyone i contracted this on may 17 2023 3 months in hospital and therapy now 6.5 at home just starting to walk short distances unassisted feels so good i pray for all who are affected by this hang in there there is light at the end of the tunnel its a rough ride but dont give up have faith in the lord and keep going
Thank you so much for sharing your light, such hope! We send you wishes for continued recovery, healing, improving health!!
I don't usually complain, ESPECIALLY not publicly to random strangers. I can't respond to evenyone. Whatever I say here will take longer than you could imagine. I still don't Have the manual dexterity for many things espetially typing (could barely type before) I wish i could. Some more interaction with people might help with state of mind/depresion. It's not unusual for me to go weeks at a time without talking to anyone. I moved far away a month before I contracted GBS. I don't know anyone close to me. I don't know is what it is. Best wishes to everyone. I appreciate the supportive comments. I wish I could respond to everyone. It would take me a year to type all that. This took me half hour🙁
✌Peace (does that even still mean peace?)
BTW I believe we're all much more alike than some people might want us to believe. Lets try to find the things we agree on instead of continuing to argue with and belittling each other.
My mom had it twice. When I was 5 and then again 40 years later.
Oh gosh!!! That’s too much!! May we ask if she’s still here and how she’s doing now?
I had Guilliain Barre Syndrome most general doctors don't recognize it only spinal fluid can diagnose it
☝️💯 May we ask how you’re doing now?
I am post GBS patient
How long it will take to recover fully
@@rohanweerasuriya956 I had GBS is 2011 and I was just a kid, to this day I still have really bad nerve pain in my hips mostly and also in my thighs and knees. As far as regaining strength in my legs it took about 2-3 years (also the amount of time it took for my reflexes to return). But man, the nerve pain is still going, for me it will happen about once a month and the pain can last for a day to a week and is more intense when it is cold outside. Best way to stop the pain for me is either Tylenol and a heating pad. The way my pain is is almost like a period but worse 😅🥲
Hi thank you for the information. Do you have tips on how to minimize/repair numbness and nerve/ muscle stiffness?
Hi Frank, we’re so sorry to hear that you’re dealing with these symptoms. Since we are not medical doctors/neurologists or physical therapists here, the most responsible thing we can do is to highly encourage you to report your symptoms to these specialists to receive the treatment and recommendations that best suit you.
I which !
I suffered badly from Guillain Barre Syndrome it started on 14th December 1999, I spent 18 months in a hospital bed before I could even start to learn how to walk again. The myelin sheaf on my nearves never grew back properly leaving my the nerves exposed especially in my joints mainly knees and ankles exposed, this causes tremendous pain but also I cannot control my body temperature anymore. All they do is give me strong opioid pain killers that work to a point but I am still in constant pain. I am alone with no family or friends now turning 60 the age is just making the pain worse, I cannot sleep and no one really understands what I am going through. Yes I had a bad case of flu the year before my conclusion is that the flu virus gets into the fatty myelin sheaf then spreads until your immune system notices it then starts attacking the virus but also damages your nervous system. I cannot find a doctor who can tell me if this is a plausible reason for the cause of Guillain Barre Syndrome.
While we are not medical experts and cannot provide any answers about the cause of GBS, we're so sorry that you've been left with so much pain in the wake of what sounds like a pretty bad case of GBS! If there is anything we have learned from Holly, it's that there are great people and organizations advocating for those suffering from GBS, and they're deeply needed since it's quite rare and many doctors have a lot to learn about this syndrome. May we ask if you've been able to connect with other GBS survivors or organizations that can help to point you to helpful resources? We just wish more relief for you! Sending you so much 💛
Makes perfect sense! Our medical schools don't focus on treating the causes of most diseases but just the symptoms and progression , unfortunately, so you have to do your own research
I currently have Gbs I was diagnosed the end of 2019 I am on a ventilator and I can’t walk and live in facility I don’t know how I got this way I just kept falling and it attacked my body Ivery quickly I don’t have any support 😢 and si don’t know how or when I am going to get better I was incubated and then put on a trache I am very weak and I don’t see any progress yet this is very scary 😢
@@leattricevaughn I’m sorry. I have gbs too. I live in a nursing home. Would you be interested in talking?
As a fellow sufferer of auto immune disease ( narcolepsy T1 w/ cataplexy and diabetes T2 ), I share your desperate frustration. Quite often, I break down and feel like yelling at God to stop this game of killing me slowly. To get on with it. Get friends who understand and become a member of a support group that meets up via video chat ( it's 2023, after all ). Human interaction is a necessity as one can't mend ones mind alone. I pray you find some peace of mind. Find some way of compartmenting the pain, and start living. I know my pain is much less than yours. My intentions are good, and I sincerely pray for you.
I'm so sorry you had to deal with this and am glad you have recovered. I have a question... did you have any pain in the legs as they were numb ? Did you have any lightheadedness and or coordination issues ?
It actually started with numbness in my thighs. Which is a little unusual. Most people notice it in their digits or the outer extremities first. I had no clues what was going on. I thought it might have been something to do with always carrying my keys in my front pockets. (My keychain has a lot of keys on it;) Thought it was keys poking me. One day I woke up and couldn't move. I couldn't get out of bed.
I was 20 years old and was lying in bed with the most unbearable pain in my legs I later learned that it was the virus attacking the nurses my coordination was so bad I trued stepping off a kerb and collapsed in a heap in the road
It was probably one of the most terrifying experiences of my life I had a period and I didn’t know as I didn’t have the sensation of pain or feeling even after all this time I still have residual weakness in feet and hands I thought I was never going to walk again
Determination plays a hug e part of getting better sending love to all that are unwell at the moment you will be ok ❤
Hi.. im meica, im from indonesia, i have GBS too, so i can feel it and still survive since Dec 2021 😇
Hi Meica! Thank you for tuning in and for sharing. To surviving GBS! Sending you 💛
What did you do to this GBS in indonesia .
Are you fully recovered.
I am in this alone. I got GBS. I rehabbed to the point of being “functional” again. Then I was told everything will get better on its own from here. It’s been almost two years and I’m not much better than I was when the treatment stopped. Nobody really listens. Everyone just keeps telling me don’t worry sometimes it takes a long time. So. Yeah some of us are in this alone!! Don’t go around saying it’s all rainbows, butterflies, and happy endings. It’s not
Sometimes it’s just really hard. I’m so sorry that this has been your experience.
When we say you’re not alone, part of what we mean is that there are others going through similar things alongside you in this world. It’s just a little reminder because it can feel so hard when we look around us and the people we see often seem to have an easier time. But that’s never the whole truth.
Anyway, we’re here and we’re sending you 💛
Ha!!! I Thought there was a bunch of replys to my comment. It was more comments under your reply.😂 I completely agree wit you. You never know what someone else is going through. Also, I don't usually go all pity party on random strangers. I was having a particularly bad day. I apologize. It seams you do some people a lot of good. The world is a better place with homest caring people in it. @@chroniclove
I am 11 and have GBs since I was 9. Before I could t move one of my legs but now I can move my left. My right leg I still can’t move or walk.
Oh gosh! So young but it sounds like you’re resilient and recovering! How are you feeling now?
Hello Earth to Robin 😂 I am completely alone all my family abandoned me soon as they found out that I had breast cancer they didn't even want to share the apartment with. They were afraid that they would catch.... How ignorant 🤣😂 so now I'm in El Paso Texas alone dealing with my breast cancer 😭😭 I've never smoked and I've never drink and I've never done drugs, 😾😾😾😾😾😾
Robin here, right with you! On earth (I think!) I want to re-share the same reply from a similar comment that you posted on a different video because I really care that you see our response!... That’s tough. If they can’t give you the support you need, there are incredible groups and resources where you can find your people both virtually and in person. Support groups, Facebook groups, nonprofits, etc. Find the people who will support you. Build your chosen family. You deserve it. Breast cancer is hard enough! Sending you 💛
I feel very bad for you; I'm sorry this is happening. If your people are so stupid to believe that breast cancer is contagious, you're better off without them in your life.
I’m sorry you going trough this I’ll keep you in my prayers that God will give you the victory over cancer and I pray the while you go through this you can experience the love of God.
I’m so sorry to hear this. I wish I could help support you and I don’t even know you. How are you coping? Have you found some outside support?
💛💛💛
My mum got it now she been on itu for 5 weeks now on Hdu but still not talking it as been 7 weeks today
My friends contracted this after the vaccine... i never realised how awful this is for him. He comes to me for regular massage reiki reflecologu cupping whatever i can do to help
You’re a great friend for helping!
Normally person spends 6-12 months in the hospital for this. It's expensive...
If this happens to an older person they will simply sent him/her home.
What a terryfying story! To think I am making a fuss about a failed root canal treatment. Thats nothing compared to this.
Interesting point about trusting doctors and your instincts. Where there is a choice, I believe the instincts are more often right than the doctor. I once had stomach cramps vomiting internitent pain. Various doctors just thought I had flatulence. I thought I had appendicitis. At the last moment an older doctor (the first after FOUR other doctors)diagnosed me with acute appendicitis. A point worth thinking about: the doctor who made the correct diagnosis actually touched me instead of just looking asking and looking at a compter screen.Anyway, when there is a conflict between doctor and instinct dont let yourminstinct be overwhelmed by the presitge of a health professional, professionals are often wrong.
When it plateaus within 4 weeks are you still very weak and fatigued