Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: freakie01, 65-74 Female (Patient) Published: July 18

I have had Guillain-Barre syndrome (GBS) since 2011, a very severe case. I am walking with a walker. My face is still frozen from my mouth up. I've lost all of my upper teeth due to nerve damage. This is a devastating disease. When will they research the causes and treatment! I was pretty much on my own, there is no solid course of action as there is with other diseases. More needs to be done!

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Comment from: LisaB, 45-54 Female (Patient) Published: June 02

I had Guillain-Barre syndrome (GBS) when very young, around age 3 or 4, so my memories of it are sort of vague. I"m writing because I"ve had neck pain and headaches for a couple of months, and now a tingly numb hand a few weeks. Tonight my feet and other hand are having pins and needles and I"m wondering about a relapse after all these years; I"m 54! I did have an MRI on brain and neck yesterday, so waiting for those results.

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Comment from: DAVID, 45-54 Male (Patient) Published: January 29

I am a 51 year old male. My body is tired constantly, pain relief does not work but other drugs can take the edge off trembling shaking and tingling. I was hit in the back with the worst pain I have ever experienced. I can't walk or stand for long, it feels like I have been trapped inside my home for the last 15 months. I'll be having more tests for Guillain-Barre syndrome soon.

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Comment from: Kim, 35-44 Female (Patient) Published: January 17

I had Guillain-Barre syndrome (GBS )in 2002. My first symptoms appeared after a head cold. I went to work, had tingling in my feet and later vomited. I went home the next day had severe sciatic nerve pain and ended up passing out. My blood pressure was 50/30 when the ambulance came. I was in the hospital for 6 weeks with total paralysis but did not have to be on respirator. I still have numbness throughout my body (especially in my face) and extremities, also muscle weakness.

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Comment from: joeo, 45-54 Male (Patient) Published: May 14

Got GBA in June 2010 after a severe stomach virus. Felt pretty good a week later then like overnight arms and legs became very shaky, to the point I could not walk. Very numb from neck down. Went to emergency room the doctor had seen it before and ordered a spinal tap. I was hospitalized for 19 days. Plasmatheresis every other day for 7 treatments. Totally paralyzed for 10 days before toe and finger movement began. The scariest feeling I have ever experienced in my life! No deserves this sickness. Know left with chronic neuropathy of the hands and feet, very prominent muscle fatigue in the shoulders and legs as well as the pain. Been a hard road but the good Lord knows what's best!

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Comment from: 35-44 Female (Patient) Published: May 14

I was diagnosed with GBS in March. It started with severe back pain, then went to my face producing stroke symptoms (3 out of 5), and then went to weakness of the legs and worked up to arms and hands. I went to several hospitals, even being sent to a psych ward. I had CT scans, MRIs, ECGs, lots of blood work, and a lumbar puncture. No one could figure it out. I was even tested for GBS and it was ruled out. Finally, after 2 months in the hospital I had a doctor who did an EMG and was diagnosed. I had IV immunoglobin given, with a single "booster dose" a week later. I finally am walking with a walker, though not very far. I still have weak muscles in the face, and legs. I have very limited use of hands as they are still numb and tingly ( along with my feet). I am unsure of recovery outlook since I had a severe case that went undiagnosed for 3 months but am grateful to be alive.

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Comment from: Pepe, 45-54 Male (Patient) Published: February 13

I was struck with GBS in December of 2010. Seems like its first symptom was a minor respiratory disorder (cough) I had. About 2 weeks later I woke up with double vision. As the day progressed so did the symptoms as my arms and legs eventually weakened. On the 3rd day I could not get up from bed. That was then the time that family members decided to bring me to a hospital where a neurologist, after conducting MRI on me, diagnosed the disease. I was treated for 5 straight days with expensive human immuno globulins while in intensive care. On the 6th day my vital signs improved. I was discharged on the 9th day. I had PT and OT sessions and became fully recovered after 3 months and went back to work. I encourage all GBS patients not to lose hope for it is reversible, and much of your recovery depends on your attitude. So cheer up!

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Guillain-Barre Syndrome - Treatment Question: What kinds of treatment did you or a relative receive for Guillain-Barre syndrome?

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