Відео

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

I have MMN , I have received 12 sessions of IVIG and have no response

Merci pour votre témoignage- beaucoup de courage et de force positive-

It would be good to know if he can run again, or has the condition just stabilised with the existing neuropathy he had.

With so much gratitude I want to appreciate Dr ekpe on UA-cam for showing up in my life at the right time. I have been down with HSV for almost a year, coming across Dr ekpe UA-cam channel and purchasing his medication was the best news of my life. Thank you doctor

Young William White Sarah Lopez Margaret

Was anybody told that they had HIV before they got diagnosed with cidp

Thomas Brenda Martin Donna Anderson Anthony

I can say that Dr Mark Sivack at Mount Sinai was who diagnosed me with CIDP and he was the one that prescribed

I have recieved IVIG for 15 years and it never worked, then I gave up on it and went to the Dominican Republic where I met with Dr. Biany Santos Pujols and she told me that she had about 9 patients on "Rituximab" and had😮 gotten rid of their walkers so I told her I wanted to try it. I got my first infusion in July of 2020 then my next infusion was in January of 2021. I tried to get the same medicine in NY, but the Dr's would not know that it was working on me. Then I went to PA and Dr Chang refused after I showed her my pictures.

Anderson Paul Walker Betty Moore Brenda

Merci docteur.apparement vous etes a Québec mais en France nous sommes complètement larguer mis a part les antidépresseurs qui nous crés encore plus d'effets indésirables.

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.

ua-cam.com/video/awmvCiwsvoc/v-deo.htmlsi=ognhSp5OgoJsI-oE

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.