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?

Thanks for this. Will use it for my GBS-Patient (Occupational Therapie)❤❤❤❤

Merci pour votre Explication mon beau frere la suite a une gastro il a ses mains paralysées Courage a vous garder le moral fait faire du kiné Gros BISOUS Priez aussi jai ete en faiteuil roulant suite a deux prothèses de hanche faut patienter aussi cest dur bon retablissement❤❤❤

Thank you for sharing! I actually know someone dealing with this.

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.

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You saying "Anxiety" speaks volumes ... how about having GBS and Autonomic Dysreflexia Combined 15 years ago then have having Doctor's saying Anxiety why having autonomic attacks ... I had 3 days in hospital when all that was needed was a BM ... Walk in pain or not is the only thing you can do with GBS

I also have MAGS. However, I never was on IVIG. MY MAG antibodies were at 29,000, normal range is 1-999. I was put on RIITUXAN which is a form of chemotherapy. I was diagnosed in NYC. I GET Rituxan every 6 months. I’m now at zero . It took 4 years to get < 999This is expected to give a chance for the Mylan sheath to heal. Mags is very rare in woman 5% have it. Mostly it’s found in men. I also experience tremors and shaking at times. I can walk now but it’s not always easy. I love the quote “ a box of chocolates, you never know what you’re going to get” each day can be different.

Lyme disease, babesia, other co infections can cause. As well as Guillian Barre Syndrome ...

I have MGUS IgM and neuropathy and loss of balance. My Oncologist tested me for Anti MAG. I am higher than normal but not high enough to be treated. I really appreciate your story, it is an "invisible" disease, I also do not like the "you look fine" comments, so invalidating to our problems. Wishing you the best

Very encouraging, thank you kindly. I've been recently diagnosed after three years of suffering and my life slipping away in so many ways. I'm grateful that I'm finally being a bit more understood and looking forward to infusions hopely soon. Your sharing is much appreciated, Tara

Thank you, your sharing is much appreciated. I so relate.

Thank you so very much, your sharing has been so very helpful. I fully relate. You give me tremendous hope. I'm hoping to find a suport group.

Thank you.

My sister is diagnosed cidp but we live in Afghanistan I don't know of any treatment

I got GBS 4th time please help me 😢😢

Est ce que c'est la même chose que la neuropathie périphérique de myélinisante chronique? Moi,ce les immunoglobulines qui me stabilisent. 5 jours par moi ts les mois pendant des années.

She did a wonderful job of describing it.

Thank you for your experience

Exactly me. All I’ve ever gotten was an idiopathic neuropathy

Our daughter was diagnosed in 1990 with CIDP. She was 16. She had IVIG treatments that were eventually able to be spaced further apart until she was 25, at which time she was back to normal! Thank God for IVIG! She’s 50 now with no lingering effects! Another success story!

I have MMN CB from 2015 in my first pregnancy

You are helping me now. I feel seen & less alone I had it for the first time when i was a baby barely 2 year old. Second time was 28. 3rd time is now at 36 Im towards the end i can walk for maybe a block. Difficult & painful doesn't do it justice. It's enough pain to make you question your reality.

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

I was diagnosed with GBS in October 2022. I spent 5 days in the hospital getting IVIG. Thankfully my Respiratory System was not involved, but just about every other system was involved .After 8 months of PT I was not improving. The neuropathies were incredibly painful. (And still are) my neurologist told me at this point my symptoms are permanent. I continue getting IVIG Every month for over a year. I have accepted my disability and learning to live with it. Best of everything to others with this crazy disease.

Thank you for sharing your story and helping all of us rare ones feel just a touch less rare and crazy.

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

How long did you have therapy for?

Hay dear, So glad u get a diagnosis I have the same symptoms for four years now,no diagnosis yet My foot is drop and my wrist drop ,i cant grip things because i have weeknes in my hand it's affecting all of my left side and progress slowly. The doctors understand that something going on but thay dont know yet unfortunately. Today I'm using a kane.

The first IVIG I had at Walter Reed caused a-septic meningitis because the infusion rate was set too high. My neck hardened up and I had a class five headache. Overtime I received treatments that were adjusted accordingly.

I was diagnosed with CIDP in 1999 and I was told there was no cure for it. Since then, they’ve been treating my symptoms and I’ve used everything from infusions, nerve stimulators, surgeries, and a bunch of pharmaceuticals. 😖

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

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.

At UNC Chapel Hill we did plasma exchange to stop the progression of the disease.

I don't know how old you video is I had GBS 91 two times in 92 and one time in 2017. The last about fortunately from start walking out on a cane from the hospital only lasted a month. The previous three times each had a duration of about 4 to 5 months from ICU to walking out the rehab hospital using a walker. Currently live with acute neuropathy pain that has to be controlled with medication otherwise I can't gain mobility to walk without feeding an agony. The arms are quite painful as well but not nearly as bad as the legs and feet. Hope you're doing well. Mentally I'm fine although the pain does have a tendency to wear me out everyday. Best regards, Steve

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.

THANK YOU FOR YOUR STORY!!❣️ I HAVE A 72 YEAR OLD close friend, currently on a ventilator & has trach. They're trying to wean him off. It's been a little over a month. They are suggesting that he may not want to be revived from any heart attack, etc. I personally believe that he should have more time to rehab. I will show him some of these testimonials. Searching for answers...

I would like to find someone to talk to my friend with GBS. He's still struggling to talk. And pretty much paralyzed from this illness.

THANK YOU SO MUCH FOR YOUR STORY!!❤ My 72 year old is suffering with GBS. He's still on a ventilator. It's been over a month. I'm Searching for answers.

❤ 72 yr. Old friend with GBS. I'm Looking for answers and solutions.

THANK U for your story. My friend had "neuropathy" symptoms last winter. GBS!? He did not go to the doctor. He Rested and took NERVIVE. Gradually seemed to get better and walk. He continued to drink beer. He was an alcoholic.Then in the spring of 2024... His symptoms came back with a vengeance. Ultimately he ended up paralyzed & on a ventilator. Diagnosed with GBS. Maybe if he would have gone last year to a Dr. 😕 Will update...

I was stricken with GBS after a day surgery. Over 5 days I became paralyzed and spent 3 weeks in the hospital (ICU) and physical therapy. Received IVG and now at home. 6 weeks in, no real improvement. Doesn’t feel like I’m ever going to get better, have lost all my hobbies and the depression is immense. God bless everyone with GBS

Which muscle was affected in your leg? How fast was the onset of your symptoms?

Great job, Pam!! ❤

I know your story ....same here. I was also pregnant during all this. Have CIDP and now the doctors dont know what i have now. Said i had CIDP and GBS But now tbe neurologist doesnt know now what i have. So i know how you feel ....felt the same. Was a cna for 25 yrs now a single parent and w/c bound.

I am so sorry this happened to you and that your husband and children had to go through the this. Not having enough friends or family for support is hard. Sometimes, hospital staff has favoritism with patients too, some patients get treated better than others. Some people that I noticed who has great support are those affiliated in Christian churches. They're the one who usually are very good about helping in ways that's needed.

I have an identical diagnosis in 2019.. CIDP anti-MAG DADS-M I have been given ONLY Gamunex-C for nearly 3½ years and have very poor strength in my ankles, no use of my toes. At this point, it's a maintenance dose to prevent symptoms from worsening. No other treatment so far. I am attempting to add Ratixumab to my meds. I have had a very difficult time with my legs and even lost ½ my progress during a 4 month insurance issue lapse. I am amazed you experienced a full (hopefully permanent) recovery with your treatment plan. This gives me hope as I need change in that area. I can barely walk with a cane, 5 years ago.. a fully functional, strong man. It is very scary to me.

From GBS TO MMNCB SINCE 2015 total hell illness 😢Physically mentally Financially Socially don’t underestimate this demise in any individual. Cannot do buttons zips meds shave trips balance walking muscle loss fasiculations cramps tremors atrophy 🇬🇧😩 and rounds and rounds of IVIG hasn’t benifited meself

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?

Similar. About 8 months from first weakness to a diagnosis with nerve impulse speed tests. First dose of IVIG was a miracle cure, but wore off in 6 weeks. Successive doses had less and less effect, leaving me unable to move except my head, and with difficulty swallowing/coughing/sneezing. Steroids had no effect. Rituximab takes 3 months to work. Now slowly improving and can work a mouse and wheelchair joystick; swallowing about normal.