GBS|CIDP Patient Video
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- čas přidán 27. 08. 2024
- Meet GBS, CIDP, and MMN patients from around the world as they tell their stories.
Questions about Guillain-Barre Syndrome (GBS), CIDP, or a variant of the condition such as Multifocal Motor Neuropathy? Or perhaps you'd like to request more information? You’re in the right place. Please connect with us below, and a GBS|CIDP Foundation International representative will get back to you within 48 hours:
www.gbs-cidp.o...
For more information: www.gbs-cidp.org/
I am fighting GBS presently. I am going to get over it.
I survived GBS seven years ago. Damn proud of it.... Learning to brush your teeth again is very humbling and walking up my 14 steps to my bed each night EMPOWERING. In your face GBS!!! I WIN!!!
It’s feels like you are a baby, that start learning walking, eating, talking. It was hard, but I’m thankful more for my life now ❤️ Inshallah everyone stay always healthy and happy. Lol my teardrop.
I had Polio in 1954. Stopped working 1999 went on disability. Then, 5 months later I couldn’t stand trying to get up from a chair, my left leg went numb. Then I felt numbness up the right side of my body. I felt the numbness getting worse. My doctor said to go the ER, that I might be having a stroke. I went through all tests and couldn’t get diagnosed. Luckily an ER Resident came in, by which time I was partially paralyzed. He immediately said I had GBS. When the ER Doctors asked why he thought so, he said they just studied GBS in neurology that week. I was hospitalized for weeks, during which time I had an episode of complete paralysis. Couldn’t blink, talk, move a finger - I honestly thought I was dead.
Because the recovery treatments for Post-Polio & GBS are completely opposite, it was decided that since Post-Polio was degenerative and GBS wasn’t (or so they thought) they opted for Post-Polio therapies combined with occupational therapy for GBS. It took a year just to turn a page in a book. It was like starting from scratch.
I was incorrectly told that I’ll get better in a few months. Now, 20 years later, I’m suffering with worsening sensory nerve pain from GBS. I use a power wheelchair. GBS is a lonely illness. I never met another person who had GBS. Most people, even nurses and doctors, weren’t familiar with it. I really feel alone, I wind up canceling most events because of fatigue and pain. I get flares of GBS which landed me back in the hospital several times, and many flares were I stayed home.
Sorry, for this screed, but I found this video on You Tube and I felt I needed to get this off my chest. Thanks.
Thank you for your story and I hope you are feeling good today!
@@whiteheart6827You are definitely not alone, and my heart goes out to you. I am also a GBS survivor and am working on ordering a power wheelchair. God has given us the strength to make it this far, and we can do better, as every day is a challenge, and we make it through it. Sharon P🌻
I wish I had someone to talk to about CIDP, I’ve had it for almost two years and it’s such a struggle
"Alphabet disease"! Great line there. I've got CIDP, too, and appreciate the stories here.
Blessings and prayers to anyone that has had to fight this terrible disease.
My wife has cidp. It only took about 2 years to have a concrete final diagnosis!! It really brings it home watching these videos. We have been in 4 hospitals 4 different rehabs, and finally after going through my wife almost dying we are at a place that only has patients with a trach. Yes that was the only way she was going to live. I didn't want to make that decision so happy my wife did. I think if my wife would have continued treatment we would be out of this place. The Dr did 2 ivig tratments and they stopped. I think they are trying to keep her from coming home. Maybe some day poeple will be watching our video, but for now we r gettn nutn
Why it took four years to diagnose??
My wife had trouble walking,had a hard time climbing stairs,she went to a Neurologist he took a test and said that it's CDIP.
@@kashkhan393 it's not easy to.comfirm.
In my father's case after 4 year doctor said it's cidp but there is no supporting test report available.
He have no suspected antibody in blood CSF protein is normal, he have balancing issues while walking and nerve conduction shows motor nerves with 0 conduction.
@@kashkhan393 I'm 16 years and just now after a negative MS MRI and Lyme Disease test are we narrowing it down. FYI I can't walk, my arms are very weak & I still am being refused anything but Lyrica for treatment.
THANKS,To all the ppl in the video.hope you ppl find peace
I have CIDP and so does my dad (I’m adopted) and neuro said it’s not hereditary but we did both catch a nasty virus 4 years ago and both started going numb and I started dropping things and falling a lot. Took a bunch of tests including blood, EMG and spinal tap to diagnose - IVIG infusions every 2 weeks help but not 100%.
I hope there is a real cure one day
I‘m only 27 y/o. I hope to Write here one day that Im over the GBS & I won..
Would love to speak to you. 305-218-8603
1st week into GBS diagnosis.
Hey buddy, how you doing now?
Tengo año y medio con guillan barret y sigo recuperandome vivo en la ciudad de México 🇲🇽 y estoy asus ordenes para contar mi historia.
Ivan gala primero déjame presentarme,soy una persona muy, muy desesperada en conocer a alguien con esta enfermedad por favor escribeme para atrás si no es molestia
I have Axonal Variant GBS and am slowly dying. I have all the really awful symptoms but it’s only going to get worse. I will stop breathing or die from aspirate pneumonia aa my neurologist said. I am in a wheelchair as I can no longer walk
😢So sorry to hear this.
I am fighting CIDP Presently
I want to more gbs coz wife is suffering still.
my father get GBS in June21, your organization working in Pakistan? i need recovery help for my father
Recovering from GBS.... How do i improve on neuropathies.
I am also a GBS survivor. All I can say is try to keep moving, remember to take your medications, and keep your mind busy. You can beat this!
I am gbs paitiont from jully 2017.
Please transaction in Hindi language. please...
It's a awful cruel disease 😂 prayers and thoughts strong 🥰🙏 to everyone with it 🙂 my twin sister has this still recovering not yet been a 11 months in bed waiting for. Phiscal therapy soon
Wieso nicht in Deutsch
Drinking alcohol is bad with CIDP patient?
My husband can't stop drinking? Anyone can help?
GBS dobrze jest Nała
GBS DOBRZE JEST