I was paralyzed from the waist down with excruciating back pain and shooting nerve pain in my legs and feet. Several things bothered me in the first day or two and that was the uncertainty of my condition. But when I heard I had GBS and could expect almost full recovery in a tears time I thanked God for his mercy and His help in therapy. It has been a year and I am getting ever closer to full recovery. If I had not had a relapse at 6 moths I think I would be there. Now it looks like it will be a little longer. I am glad they were quick to diagnose his gbs and treat it promptly. Gbs is so rare not all doctors diagnose it promptly as they very seldom see a case. May God be with your father for He is the great phycician.
mdolich said:
I'm glad to hear your recovery from GBS. Most people do have a full recovery, but there are some of us that don't. If you read my story you'll see that I didn't fully recover from GBS, and was re-diagnosed CIDP after having a couple of relapses. I've been getting IVIG ever since 2006, and will for the rest of my life (according to my neuro's). I get 80 grams every three weeks.
Your right when you say many doctors don't diagnose it promptly, but I believe that's because not to many doctors or neuro's have had patients with GBS/CIDP in the past. Many doctors/neuro's have only read about it, but never had to deal with a patient with it. I was lucky that my first neuro diagnosed me right away. The doctors in the ICU didn't know what was wrong with me when I first came down with it. Mine was what they call "Sudden Onset", I went to bed one night and woke up the next morning paralyzed from the waist down. I was rused to the hospital, and within 48 hours I was paralyzed from the neck down, comatose, and on a ventilator. Most people only have a mild case of GBS, where it develops slowly over time. Then there are some of us have a severe case with sudden onset.
Like we always say, everyone is different and response differently to treatment. Some have a full recovery, others may still have residual effects form GBS, and few (like me) end up with CIDP (the chronic cousin/form to/of GBS), and have to keep getting IVIG infusions.
Good Luck, 'Stay Strong and keep a Positive Attitude"
You guys are such an inspiration to me. The first couple of doctors that I saw thought it was in my mind or I was on drugs or I had been watching too much House-sounds funny but it was more terrifying than the problem itself. I was so afraid when I was turned away to deal with all of this on my own. I was pitiful. But thankfully I found other people who understand and I am recovering and regaining my life. And it’s nice to know if I do relapse that there is support out there and I can manage it and carry on
You give me something to look forward to. Iam so afraid of a relapse. I got my GBS in may 2014. I can thank the doctors when in the ER for helping me. The few doctors while in the hospital. I didn’t know how rare and how bad GBS. So while in the hospital they wanted me to go to a nursing home. I went home. I know now I should not have gone home. Iam 510 and was under 140 pounds. So it is sad that GBS is so rare, and after my release i can’t get treatment. I look forward to the day that iam close to 100%
My daughter is recoverying from GBS she was diagnosed with it in April she now can drive walk with stiffness things she struggles with bending and pick things up off the floor, She still deals with the pain and tires easily. What surprises me how many of you came down with this again and what are the odds
This scares me I don't know if I could go thru this again or if she will be able she was in so much pain and hospitalized til Augus t 1st (14 weeks)
Penny said:
My daughter is recoverying from GBS she was diagnosed with it in April she now can drive walk with stiffness things she struggles with bending and pick things up off the floor, She still deals with the pain and tires easily. What surprises me how many of you came down with this again and what are the odds
This scares me I don't know if I could go thru this again or if she will be able she was in so much pain and hospitalized til Augus t 1st (14 weeks)
You don’t mention what treatment they gave her in the hospital, it would help to know
My daughter relaps with only feet paralysis but legs very painful her doc ordered an spinal and came Back as GBS again
She finally came home after3 months but got it again
Hi Penny, I'm so sorry about what happened to your daughter. They say it's a slim chance but I too relapsed but I was still a patient in the rehabilitation facility. This is what I've gathered about this syndrome because it is considered a syndrome and not a disease like most call it. I have been reading for years and I am telling you it points to one thing and its the bacteria in our stomach. For most people, they fight off infection and/or take antibiotics but for us who were infected we lost the battle in the bacteria war. I'm no Doctor and as you know they give you very limited information when seeking answers because they don't know. If you ever have time google Campylobacter and just gather as much information for your knowledge. My parents didn't know what happened to me either and since the dr said I was fine, they assumed I was fine. As I got older, I needed to find answers for myself. I wish your daughter a speedy recovery!
Penny said:
She finally came home after3 months but got it again
Hi penny. My name is James. I’ve had GBS for 8 months. The first 5 months I was paralized. I didn’t start getting better untill my body was ready to. I did physical therapy hrs a day, but you must stop when your tired. I slowly got better. When my body was ready, I progressed. I now am using a walker and streantnining my legs. I feel it will be a year since it started. Everyone heals and responds differently to therapy… But most of all don’t give up. Try to be possitive. Don’t feel sorry for yourself. Getting better will happen when your body is ready.
God bless you and I’m sorry your going through this.
James
Ivig
Petr said:
You don’t mention what treatment they gave her in the hospital, it would help to know
And start it again two days the ivig feels nothing in her feat but can feel her legs and legs are super sensitive to touch
Penny said:
Ivig
Petr said:You don't mention what treatment they gave her in the hospital, it would help to know