Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: Bonu, 25-34 Female (Caregiver) Published: August 14

My whole body was paralysed for six full days. There was no movement of any of my body parts except my head. I could either shake or nod and I could speak, that was all. Although I could feel the coldness in my hand and feet soles(they were not cold all the time). I could also feel sharp pain while the IV needles were pierced in the backs of both my hands. At the end of the treatment my hands had swollen like an elephant and they were awfully painful. Finally after five days my left hand index finger showed some movement. There was no looking back after that. Today, I am as hale and hearty as the next person, although there is a certain amount of weakness.

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Comment from: Jeremy, 25-34 Male (Patient) Published: March 15

I was diagnosed with Guillain-Barre syndrome about 13 months ago. It started with an extreme pain and tingling in my feet, then a horrible loss of balance. I was falling all over the place, and couldn't drive or go to work. I went to the emergency room and received a B12 shot because they thought I might be Folic Acid or B12 deficient (no bloodwork done). As others have stated, I saw about a dozen doctors before a neurologist finally came in and knew exactly what the problem was. I was in the hospital for one month, then another six months of physical therapy. It has been over a year and I am still not right. I still have tingling and weakness in my knees, ankles, feet, and to a lesser extent my lower legs. Luckily my hands and arms recovered rather quickly. This infliction is very frustrating and you feel like you will never recover. I haven't felt my ankles in 13 months it's scary! Now I can do certain things I couldn't a few months ago; golf, bowl, etc. You just gotta keep hanging in there!

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Comment from: Justmarried, 19-24 Female (Patient) Published: February 23

Symptoms of Guillain-Barre syndrome began with a “pins and needles” sensation in my feet. The next day all my muscles felt like Jell-O. On day 3, I was unable to stand up and walk, had severe back pain, and sensitivity to light. The tingling spread up my legs and to my hands and mouth. I was admitted to a hospital, and given an IV of immunoglobulin for a week. While my symptoms did not improve that week, the next week I began to regain some feeling in my extremities. It was a very scary and long ordeal. But you get through it. I promise. I had to learn how to write, walk, and bend over all over again. Good way to learn patience!

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Comment from: Kelsey, 13-18 Female (Patient) Published: April 05

I was diagnosed with Guillain-Barre Syndrome two weeks after my 16th birthday. I had my symptoms of this disorder for about a week before I told my mother I wanted to go to the hospital. I went to me local hospital twice before the ER doctor told me that something was really wrong and that I need to get be sent somewhere that could help me. I received a spinal tap, two MRIs, an X-ray, a CT scan, EMG, and had a line so that I could receive my medication faster. Within a week I had most of my strength back. The doctors said that my body took the medication better than most people. I had to go through a number of physical tests in order for them to discharge me.

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Comment from: 55-64 Male (Caregiver) Published: July 06

My husband got gbs after having been diagnosed with Malaria. He had terrible pain in his legs and back, suffered with bouts of very high blood pressure, lost the use of his legs and arms but was able to breathe on his own. He was diagnosed rather quickly and was treated with plasma exchange. He was in rehab for 2 months and now after a year and a half still has bad tingling and vibrating sensations in his feet, otherwise he is ok, but much weaker than before.

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Comment from: NikkiT, 13-18 Female (Patient) Published: March 05

I experienced severe numbness in my hands and feet, twitching in my face, and progressive weakness in my limbs. Additionally I had no reflexes and my pupils would not dilate.

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Comment from: agnes, 19-24 Female (Patient) Published: February 23

I have had Guillain-Barre syndrome since December 2005.The very first symptom was severe back pain, which moved to my right leg and then my left leg. The pain was intolerable.

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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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