Guillain-Barre Syndrome GBS

I had GBS a few years ago when I was 14. I had a very mild case. It started with tingly fingers and toes followed by weakness and fatigue as well as balence being off. I thought it was nothing so I dismissed it. After three weeks I went to the ER where they were completely stumped about what was wrong with me. After many tests they diagnosed me with GBS which was treated with IVIG. The main reason I joined was to discuss my shaky hands. After three years of being fine other then my fingers and toes getting cold quickly I have started to get very shaky hands. They are constantly shaky and I am trying to figure out if it is normal in former GBS patients. Please let me know! Thanks

Hi I had what was considered a mild case of GBS back in April. I am back at work and had been really good for 6 weeks then down I went. It was so disappointing. I think my body was fighting some sort of virus and I also went crazy cleaning my house. I get the internal shaking when I am like this as well as pain in my legs and tingling in my hands feet and face. My anxiety then goes through the roof, it's a vicious circle.

I received the flu shot Thursday, November 10, 2016. I felt fine until 3 days later. I was cooking dinner and got this horrible pain in my left hand that spread up to my elbow. Shortly after my hand turned numb. The pain was so bad kept me up at night. That started on Sunday. Pain persisted through the week. Thursday I woke up and the pain had spread to both arms hands legs and feet. Numbness in both hands, feet and mouth. Went to doctor and was dismissed completely. Felt with in for another week than ended up in the hospital. Had several tests done including lumbar puncture mri ect. After 3 days in hospital I was related and told everything looked normal and just to wait it out. I went home and continued to worsen. So weak. Hard to walk. So much pain. My doctor started me on prednisone. I was on that for three weeks. Although it seemed to ease the pain, it hasn't gone away. I had a couple good weeks beginning of January where my pain was tolerable. Than out of know where last Thursday the pain just exploded throughout my body and hasn't stopped. I'm so weak. So exhausted, even though I'm sleeping 10 hours at night. The pain is the worst it's been. I still have no diagnosis but it really sounds like everything else's I've read here. My pain is always changing. It's always moving across my body. My hands don't work right, I feel like a baby learning to pick ups their cherrios. I'm so frustrated and just want answers.

This page has helped me tremendously. I really didn't feel like there was a place I could go to talk about my experience. I keep hearing how lucky I am, doesn't feel like it some days. I had a 24hr stomach virus on December 28th, me and a coworker got violently ill. She went to the Emergency room and they thought she had food poisoning. But we both worked together two nights later and were completely fine. About a week later on January 5th I woke up and it felt like my left hand was asleep. I remember thinking I must have slept on it funny, tried to shake it off. It wasn't until I went to walk up the stairs that I realized something was weird, my feet felt asleep. And I could feel my right hand progress throughout the day. All 4 limbs felt the same as the day went on they were asleep. I went to the mall that night and could barely get to the car I was so weak. I called my mom on the way home just to have someone to talk too, told her I felt strange. I kept telling myself I was over tired I had been working a ton of overtime for months thought maybe I over did it. The next day I was out with a friend who is also a nurse and I told him my hands and feet were completely numb he made me call my primary doctor. She saw me right away. I have had a problems in the past with a low potassium. So she thought maybe it was a low electrolyte. They drew lab work but it was late on Friday afternoon by then and she said the results wouldn't be back until Monday. My boyfriend and I had planned a special date that night I even bought a new outfit. I cancelled which is so unlike me. He went out with our friends that night I told him to go. I fell asleep on the couch and it was about midnight that i woke up in the worst pain I've ever had in my life. I felt like someone dipped my hands and feet in boiling water, they were on fire and burned so bad. I cryed for hours until I fell asleep again. Around 5 am it started again. I was also having like muscle spasms in my feet. So I decided to go take a bath thought maybe it would relax my muscles. I already went to the doctors the day before I was trying to wait the results out. For me the hot water made it so much worse. My ankle kept giving out walking down the stairs and i almost fell down the stairs. I woke my boyfriend up at that point and said we need to go to the Emergency room something is seriously wrong. I was blessed by so many angels from there on. The labs in the Emergency Room were normal but the doctor said can we do a spinal tap I think you may have GBS. That came back normal. He insisted on admitting me. My primary doctor was in the hospital and I saw her within a few hours. She said I just had a case where the person had GBS but the test came back normal it doesn't show until the 2nd to 3rd week of symptoms. She consulted with a Nuerologist who saw me the next day on Sunday morning. Within an hour they started IVIG infusions, my 3rd day of symptoms which stopped the progression. It was hard for me and the workers too I work in the hospital where I was treated and I was declining rapidly. Made it emotional for everyone. I spent 6 painful days in the hospital. Excruciating the burning and pain. Thank God they ordered Nuerotin I feel that it was the only thing that eased my nerves. I went home and felt really emotional because I wasn't bad enough for inpatient rehab but couldn't take care of myself. I'm 40 yrs old and someone had to stay with me in the shower, walk with me. I've been through a lot of stuff in my life but I could always take care of myself. A few yrs ago I had a severe case of Bell's palsy so I told the Neurologist I'm done with Neuro stuff for life now I maxed out. Lol. No more. Two weeks after discharge an EMG confirmed GBS. I started Physical and Occupational therapy both twice a week. The pain has eased and the burning is almost gone but if I over do it I pay for it all night it flairs up. They doubled the Nuerotin at night I have the most pain then. I have to be very careful I cut my hand in the kitchen and didn't even feel it until blood was everywhere. It's weird learning how to do things with totally numb hands and feet. I can walk so I'm lucky they say. I hope to go back to work within 3 months since the start of all of this. I'm just taking it one day at a time and praying I make a full recovery. Reading all your stories gave me hope. Thank you.