Patient Comments: Guillain-Barre Syndrome - Symptoms

What symptoms did you experience with Guillain-Barre syndrome?

Comment from: Annie, 55-64 Female (Patient) Published: November 16

I experienced extreme fatigue after work and went right to bed. I experienced severe leg cramps during the night. Next day legs were weak which I attributed to the leg cramps. Then that night I had a severe back ache that lasted all day. I went to a football game that night and felt overall tired and weak. Next day I spent all day in bed, then following day I could not stand or walk. I went to a small hospital emergency room (ER) where they thought I was having a stroke and transferred me to larger hospital. Blood tests, MRI, and lots of morphine later they diagnosed me with West Nile virus and said they could only treat symptoms and the rest would heal on its own. I saw a neurologist at the hospital. I returned home and was in a lot of pain and continued to get weaker. Another trip to local ER ended up with more pain medicine but no improvement. I was sent home again and within a week I had constant nausea and continued to get weaker every day. I called my new neurologist who told me to go to a larger hospital ER. Within hours of getting to the ER they predicted Guillain-Barre syndrome (GBS) and admitted me. I was given more MRIs, a spinal tap and then 5 treatments of IVIG. Then I was sent home to follow up with 4 more outpatient IVIG infusions and physical therapy 3 times a week. I have finished my last IVIG for now and can now walk with a cane for short distances and continue to improve every day. It's been 5 weeks since I left the hospital unable to walk, stand or put myself to bed. I now take only tramadol at night to help me sleep. I am now driving myself to therapy and start back to work next week as tolerated. I expect to walk without a cane by the end of the year. My only regret is that the entire illness was not diagnosed the first time as, if treatment had begun sooner I would probably be 100 percent recovered by now. My neurologist does expect me to have a full recovery and I will not allow myself to have anything less.

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Comment from: Nina, 55-64 Female (Patient) Published: November 11

I was 24 when I woke up one morning and had pins and needles feeling in the opposite arm and leg. I thought it was a pinched nerve at first but as the day went on both arms and legs were feeling the same. The next morning I could just about get out of bed. I went to the emergency room (ER) and they did x-rays and blood work. Nothing showed and I was discharged. I tried to get out of the wheelchair and fell to the ground, went back into the ER and they called a neurologist who wanted to do a spinal tap to rule out multiple sclerosis. They came back and said it was Guillain-Barre syndrome (GBS). I was paralyzed from the neck down, had to have a tracheotomy and plasma fluoresces. It took at least a full year to recover which included physical and occupational to learn to walk and function. I am now 55 years old.

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Comment from: lizrecovering, 55-64 Female (Patient) Published: October 06

On Monday July 13, 2015 I came home from work and all of a sudden had a horrible cough and flu like symptoms. I nursed myself thinking it was a summer cold or flu. On Thursday July 16 I got in to the doctor and she told me it may be a virus but prescribed me amoxicillin for my sinusitis, ear fluid and lungs. By Monday July 20 I thought I was feeling better when exactly at the same time after work driving home, I started losing feeling in my legs. I thought it was restless leg syndrome. It hurt so badly. I went back to doctor on Tuesday July 21, told blood tests were fine, just a virus that has to get through me. Legs hurt so bad I went to the emergency room (ER) that night. Still no diagnosis as all tests were normal. They gave me pain pills and sent me home. Thursday went back to doctor for follow up. My legs were better but I was starting to lose vision, and still no one could figure out the problem. Friday morning July 24, 2015, I was working at home and all of a sudden my left eye started pulling, my vision got worse, arms and hands tingling and I couldn't walk; I thought I was having a stroke. I went to the ER and thank goodness that doctor realized it was neurological. I found a neurologist who clinically diagnosed me with Guillain-Barre syndrome (GBS) with the Miller Fisher variation. My spinal fluid came back clear which is really weird. My paralysis continued through my body. I was in hospital for 5 days with IVIG treatment and transferred to rehabilitation facility for 3 weeks. I had to learn to walk, and re-use my arms and hands, etc. My swallowing and speech came back quickly. It is now October 2, I still have tingling in my toes and feet and legs but can walk without my walker. My arms are still weak but right arm is improving faster than left side. I still cannot raise arms higher than my waist, and still have double vision. My nerve pain is incredible though I am on gabapentin. At night it is worse and it feels like someone has poured cement on my spine and arms when I lie down. It is hard to sleep but I take medication for that unfortunately. I didn't have it in rehabilitation. I hope it is a sign of healing but it is very weird. My diagnosis is to get back to 100 percent as I was a healthy, strong working woman and plan to be again. I hope this information helps others.

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