Patient Comments: Guillain-Barré syndrome - Symptoms

What symptoms did you experience with Guillain-Barré syndrome syndrome?

Comment from: Loveless4756, 35-44 Female (Patient) Published: June 24

For my broken jaw they placed four screws in my gum line, two screws on the top, and two on the bottom. Afterwards they put rubber bands on the screws to help guide my bite and help it heal correctly.

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Comment from: Jane Doe, 45-54 Female (Patient) Published: May 06

I had a terrible flu that I caught from my husband. It took me about two weeks to get better. I had one day of feeling normal. The next day I woke up and there was a feeling of pins and needles in my finger tips and the tops of my feet. It spread up my fingers and feet during the day and I noticed it was harder to climb the stairs. I was very tired. I knew about Guillain-Barre syndrome (GBS) and googled the symptoms and disease. It scared me as I had all the symptoms. By the end of the day I was having trouble standing up. I called Accident and Emergency and was told it was probably flu residuals. I went to bed. The next day, I woke up and could not stand up or move my legs. I went to the hospital in an ambulance. I got really lucky and the first doctor to treat me diagnosed me with GBS. I found out later they had 3 other cases of GBS currently in the hospital. They started me on IVIG right away. It progressed up my arms and legs until I was fully paralyzed. I could not urinate or defecate. A catheter was inserted, and was not removed for about a 3.5 weeks. It hit my breathing and my autonomic nervous system. I had to be put on a ventilator. My blood pressure sky rocketed, and my heart began to fail. I experienced extreme hallucinations when I closed my eyes. My feet and lower legs felt like they were in a vice. After about 5 days of pure agony, I began to be able to move my feet again and my right arm. Slowly, movement came back. I was taken off the ventilator after 9 days on it. I was sent down to a ward, where strength slowly returned to my arms, hand, and legs. Eventually I was able to move myself around the bed with my arms, I could text on my cell phone. Then I got a urinary tract infection from the catheter. It was removed, and I was put on IV antibiotics. Either I had an allergic reaction to the antibiotics or my GBS flared up again, but my hands got weaker again. After a few horrifying days in which they thought my GBS was returning, it reversed again. I was eventually discharged to physiotherapy two days after I did my first wobbly tottering stroll with a Zimmer frame around the ward. In physiotherapy, I was able to walk with a cane, climb stairs, stand up from a chair, and on my last day there I walked 3 unassisted steps. On the three month anniversary of my GBS, I saw my neurologist. My reflexes have fully returned. I can walk normally, do squats, jump, and run. There is still some numbness in my ankles and shins, and intermittent numbness in my skin. I also fatigue easily.

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Comment from: francois, 45-54 Female Published: January 26

The only medication which works for my cluster headaches is prednisone 5 milligram. After15 minutes, I am pain free.

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

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