My son was diagnosed when he was 2 yrs old, he is 14 now, and relapsed when he was in the recovery phase. It was so long ago that doctors really had no idea what was going on and he was mis diagnosed for so long that he was 85% paralyzed. He was hospitalized and given IVIG but like you it did not progress as bad. He has a lot of residuals secondary to GBS especially with his legs and feet and respiratory. Im so happy I found your page on facebook but I haven’t found alot of information or people that were diagnosed as toddlers. We were very fortunate to have it even diagnosed and doctors were amazed because he was still alive, it was so rare back then that they called him a miracle baby and had other neurologist see him because they had never seen a baby with it. We live in California and getting him appropriate care has been hard due to insurance issues but we are also lucky to live in a border town and have wonderful private doctors that see him with my insistence, lol, because its even more rare in Mexico and sometimes Im reading medical books with these doctors, but Im great full!! Thank you for putting yourself out there and bringing us education on GBS!! God bless you!!
Just discovered your excellent video. Thank you! I entered the Guillian-Barre club in May of 2019. I consider myself (still) in recovery as I progress very slowly. Fatigue is the most difficult symptom as I seem to tolerate the (nerve) pain associated in GBS. My prayer is that I'm on the five year plan and will fully recover within that time frame. I am grateful to be alive really, so to be honest, everyday is a gift. But in all the videos I've (just begun) to watch, yours's is the most informative and inspiring. Again, thanks
I don’t know how I found your channel but I’m so extremely blessed and thankful that I happened to watch your initial videos. I was sooo amazed and impressed with the dedication and love shown to you by your husband and family and especially amazed at your never ending desire to persevere and succeed. You actually changed my life in a profound way just by watching your journey helped me get through a severe depression that took over my life. I am a very busy mom with 3 grown children that are in their late twenties , I also have 2 precious 15 year old twins , a son and a daughter. I am 56 years old mother that is so needed at this difficult transition from tweens to teenagers and all challenges and peer pressure young adults go through at this stage in their lives and unfortunately I was suffering immensely with a serious depression that suddenly came over me and basically left me helpless, overwhelmed , and unable to function as a good mother that I have been over the last 30 years. I felt a shadow of darkness take over my spirit but I am unbelievably blessed and sooo happy to tell you that after watching your videos and seeing how life can really give us a true challenge out of the blue such as yours , made me have a profound awakening to the insignificant things I was going through honestly I felt like my life was so challenging and hard but after seeing what life handed you and also to see how you persevered and just conquered the unbelievable uphill battle and came out of it successfull really truly put my so called “depression “ completely into perspective . It made me realize how good I really did have it and how I have been taking my good fortune and especially my treasured health and wonderful family for granted . I no clue and I just can’t emphasize enough how your journey opened up a light of positivity and awareness of how much I did have in my life 🙏 thankfully it was a quick process that was literally a cure that happened from my childrens perspective overnight. I am in shock that just by watching what you went through effectively “cured “ my thought process immediately from such a dark dismal outlook on life that I allowed to take over my sanity and spirit for the last few months to the realization that I can just be grateful and happy and live my life in peace and love I just felt like I needed you to know how much you have impacted my life and the lives of my children they are all in awe that from one day to the next how much I changed my outlook and attitude and the way I respond and speak to everyone the last few days since watching all your videos. I can’t ever thank you enough God was truly looking out for me and my family by putting me in contact with you and your incredible inspiring journey ❤️❤️❤️Thank you thank you thank you 🙏 🙏🙏🙏🙏🙏❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️😘😘
My father was diagnosed with gbs in April 2005. A relative mild attack. June 2005 he had a relapse. He nearly recovered 100% with only periodically pain. In 2018 he got a severe attack to the extend that he was completely paralysed. He was 5 weeks in icu and unfortunately passed on as a result of the severity of gbs. He was 80 years old with the last attack which also made recovery a major challenge.
this is absolutely heart breaking! I am so sorry for your loss, he sounds like a fighter, to go through what he did twice. Prayers and love for your family.
Just finding your channel. Been searching for resources since there’s just not a lot known out there and everyone’s cases are so different. I was diagnosed in April of this year. I experienced the weakness and painful tingling in my lower and upper extremities as well as extreme back pain that shot down both legs. I never progressed to any paralysis, fortunately but I did receive IVIG and then spent two weeks in an inpatient rehab to regain strength and help me walk again because between the weakness and pain it had become difficult and I’d lost all endurance. A week ago I began experiencing those symptoms again three days after my Dr and I attempted to reduce the frequency of some of my medications. I also had an upper respiratory infection a month ago. I ended up going to the ER because I became so afraid it was coming back. I was discharged after my spinal tap and MRI came back fine, but my pain is still with me and I feel like I’m beginning to experience fatigue again. They truly believe this is not a reoccurrence but I am still a little afraid. I’ve not had this pain since I was still in rehab, it’s awful. It’s hard to find people that understand. I have a little girl too and I hate worrying her or having to be away from her.
I have had UTIs of GBS since October and been on antibiotics.. Have not been able to heal of GBS.. I'm going to following up with infection disease and GI doctor
Worried that I'm about to have a reoccurrence. Feeling very fatigued, have cold sensation in many parts of my body, and mild tingling is beginning to occur as well as the headaches. It's shocking. I have a neuro appointment next Friday. We'll see what's up.
One of the residuals that I have is mental fatigue, i get sooooo fatigued after working for an hour or even less, i feel soo tired the rest of the day, do you have a video talking about this?
And the doctors in Canada, keep labelling us under one category. I suffer Relapses, I been told I have a 100% it coming back 50% to attack the same part of my body. The other 50% attack the other parts of my body. I got the burning nerves.
My mom was diagnosed with GBS three years ago but she is currently feeling so fatigued, has acute nerve pain and she can´t stand any cold weather, water, wind, anything.. we live in a very hot country and she has to use double pants not to suffer severe pain constantly.. I have no idea how to support her because I don´t know what she´s going through. I do my best but it hurts me that she is so depressed lately, she stopped having the medication because the corticoids made her gain significant weight and she doesn´t exercise yet she has to work on a daily basis (I mean who doesn´t with this pandemic going on).. I am not sure if she is having a relapse but I can tell she feels alone given and hopeless since she lives with so much pain constantly. thanks for sharing your story. I am trying to learn and inform myself on the matter lately.
My son was diagnosed when he was 2 yrs old, he is 14 now, and relapsed when he was in the recovery phase. It was so long ago that doctors really had no idea what was going on and he was mis diagnosed for so long that he was 85% paralyzed. He was hospitalized and given IVIG but like you it did not progress as bad. He has a lot of residuals secondary to GBS especially with his legs and feet and respiratory. Im so happy I found your page on facebook but I haven’t found alot of information or people that were diagnosed as toddlers. We were very fortunate to have it even diagnosed and doctors were amazed because he was still alive, it was so rare back then that they called him a miracle baby and had other neurologist see him because they had never seen a baby with it. We live in California and getting him appropriate care has been hard due to insurance issues but we are also lucky to live in a border town and have wonderful private doctors that see him with my insistence, lol, because its even more rare in Mexico and sometimes Im reading medical books with these doctors, but Im great full!! Thank you for putting yourself out there and bringing us education on GBS!! God bless you!!
Just discovered your excellent video. Thank you! I entered the Guillian-Barre club in May of 2019. I consider myself (still) in recovery as I progress very slowly. Fatigue is the most difficult symptom as I seem to tolerate the (nerve) pain associated in GBS. My prayer is that I'm on the five year plan and will fully recover within that time frame. I am grateful to be alive really, so to be honest, everyday is a gift. But in all the videos I've (just begun) to watch, yours's is the most informative and inspiring. Again, thanks
Thank you for sharing. Life after GBS isnt easy, but it is worth it! Never give up, keep fighting!! Thanks for the follow !
I don’t know how I found your channel but I’m so extremely blessed and thankful that I happened to watch your initial videos. I was sooo amazed and impressed with the dedication and love shown to you by your husband and family and especially amazed at your never ending desire to persevere and succeed.
You actually changed my life in a profound way just by watching your journey helped me get through a severe depression that took over my life. I am a very busy mom with 3 grown children that are in their late twenties , I also have 2 precious 15 year old twins , a son and a daughter. I am 56 years old mother that is so needed at this difficult transition from tweens to teenagers and all challenges and peer pressure young adults go through at this stage in their lives and unfortunately I was suffering immensely with a serious depression that suddenly came over me and basically left me helpless, overwhelmed , and unable to function as a good mother that I have been over the last 30 years. I felt a shadow of darkness take over my spirit but I am unbelievably blessed and sooo happy to tell you that after watching your videos and seeing how life can really give us a true challenge out of the blue such as yours , made me have a profound awakening to the insignificant things I was going through honestly I felt like my life was so challenging and hard but after seeing what life handed you and also to see how you persevered and just conquered the unbelievable uphill battle and came out of it successfull really truly put my so called “depression “ completely into perspective . It made me realize how good I really did have it and how I have been taking my good fortune and especially my treasured health and wonderful family for granted . I no clue and I just can’t emphasize enough how your journey opened up a light of positivity and awareness of how much I did have in my life 🙏 thankfully it was a quick process that was literally a cure that happened from my childrens perspective overnight. I am in shock that just by watching what you went through effectively “cured “ my thought process immediately from such a dark dismal outlook on life that I allowed to take over my sanity and spirit for the last few months to the realization that I can just be grateful and happy and live my life in peace and love
I just felt like I needed you to know how much you have impacted my life and the lives of my children they are all in awe that from one day to the next how much I changed my outlook and attitude and the way I respond and speak to everyone the last few days since watching all your videos. I can’t ever thank you enough
God was truly looking out for me and my family by putting me in contact with you and your incredible inspiring journey ❤️❤️❤️Thank you thank you thank you 🙏 🙏🙏🙏🙏🙏❤️❤️❤️❤️❤️❤️❤️❤️❤️❤️😘😘
🌹🌹🌻🌻❤️❤️
My father was diagnosed with gbs in April 2005. A relative mild attack. June 2005 he had a relapse. He nearly recovered 100% with only periodically pain. In 2018 he got a severe attack to the extend that he was completely paralysed. He was 5 weeks in icu and unfortunately passed on as a result of the severity of gbs. He was 80 years old with the last attack which also made recovery a major challenge.
this is absolutely heart breaking! I am so sorry for your loss, he sounds like a fighter, to go through what he did twice. Prayers and love for your family.
Thank you.
Just finding your channel. Been searching for resources since there’s just not a lot known out there and everyone’s cases are so different. I was diagnosed in April of this year. I experienced the weakness and painful tingling in my lower and upper extremities as well as extreme back pain that shot down both legs. I never progressed to any paralysis, fortunately but I did receive IVIG and then spent two weeks in an inpatient rehab to regain strength and help me walk again because between the weakness and pain it had become difficult and I’d lost all endurance. A week ago I began experiencing those symptoms again three days after my Dr and I attempted to reduce the frequency of some of my medications. I also had an upper respiratory infection a month ago. I ended up going to the ER because I became so afraid it was coming back. I was discharged after my spinal tap and MRI came back fine, but my pain is still with me and I feel like I’m beginning to experience fatigue again. They truly believe this is not a reoccurrence but I am still a little afraid. I’ve not had this pain since I was still in rehab, it’s awful. It’s hard to find people that understand. I have a little girl too and I hate worrying her or having to be away from her.
Thinking of you. My website can also provide some resources. Hollyaftergbs.com
I had never heard of GBS before....thank you for talking about it. I wish you well for the future xx
Thank you!
I have had UTIs of GBS since October and been on antibiotics.. Have not been able to heal of GBS.. I'm going to following up with infection disease and GI doctor
Sorry pain full you worked hard
Worried that I'm about to have a reoccurrence. Feeling very fatigued, have cold sensation in many parts of my body, and mild tingling is beginning to occur as well as the headaches. It's shocking. I have a neuro appointment next Friday. We'll see what's up.
I’ll be thinking of you! It’s hard to know the difference, but never hurts to get checked out. Hope you feel better soon.
5 years for me, still have bouts of tingling and burning nerve pain in feet and legs.
One of the residuals that I have is mental fatigue, i get sooooo fatigued after working for an hour or even less, i feel soo tired the rest of the day, do you have a video talking about this?
I watch you strength 💪
Have you had a stool PCR test for campylobacter?
Your eyes are very pretty
❤️
Hey Holly how was your day been
And the doctors in Canada, keep labelling us under one category. I suffer Relapses, I been told I have a 100% it coming back 50% to attack the same part of my body. The other 50% attack the other parts of my body. I got the burning nerves.
Not everyone recovers unfortunately and you are right, everyone is so different
Do you speak spanish
No she probably speaks French, she’s from Canada.
Ok thank you
My mom was diagnosed with GBS three years ago but she is currently feeling so fatigued, has acute nerve pain and she can´t stand any cold weather, water, wind, anything.. we live in a very hot country and she has to use double pants not to suffer severe pain constantly.. I have no idea how to support her because I don´t know what she´s going through. I do my best but it hurts me that she is so depressed lately, she stopped having the medication because the corticoids made her gain significant weight and she doesn´t exercise yet she has to work on a daily basis (I mean who doesn´t with this pandemic going on).. I am not sure if she is having a relapse but I can tell she feels alone given and hopeless since she lives with so much pain constantly. thanks for sharing your story. I am trying to learn and inform myself on the matter lately.
I' am so still suffering.. But they I' am cured.
Im sorry to hear you are still struggling :( Please know it does get better.
Some people it stays with them
Yes, there is a chronic from of GBS, called CIDP. People with CIDP require on-going treatment! And GBS residuals can linger for many years.
Mm I was injury