Patient Comments: Guillain-Barré Syndrome - Symptoms

Question:

What symptoms did you experience with Guillain-Barré syndrome? Submit Your Comment

Comment from: bc, 13-18 Male (Caregiver) Published: July 11

I had just been given contrast dye for an angiogram, gone through the tunnel and immediately felt like I was going to vomit, hot, couldn't breathe, very ill, and confused; it was so quick. Straight away everyone was there putting things in my cannula, steroids, antihistamines, and something else but I was getting worse; just could not breathe and my blood pressure was sky high it was so scary. I was taken into a side room where I was monitored and given more oxygen, and I also heard them mention incubation. It was just awful, I felt like a lorry was on my chest, felt sick and just thought I was going to maybe die. I had had contrast dye many times but this reaction took hours to get me stable and took hours for me to breathe properly again; and they told me it could come back again later. It was a severe allergic reaction to the dye. This episode of anaphylaxis was a few months ago. A few days ago I had a bad reaction to amoxcillin where my stomach bloated out. I felt ill and tight in the chest. I got paramedics to come and he said it was a bad reaction as my blood pressure was so high and said I needed antihistamines which he gave me. At the hospital I had tests and was feeling a bit better, but was kept in accident and emergency to keep an eye on me. They changed my antibiotics and sent me home but next day I had trouble breathing but managed to get through it. I wonder why I had these after taking the stuff many times before. I am still feeling a bit rough but that's the antibiotics.

Comment from: tom, 45-54 Male (Patient) Published: March 23

I was diagnosed with Guillain-Barre syndrome (GBS) in 2015 after I couldn't breathe and had pins and needles pain in my legs and feet. I then started to go paralyzed waist down. I was admitted to the hospital for 5 weeks I too had IVGG, and since then I still fall trying to walk. My arms and face twitch, the pain in my spine is unbearable, and no amount of painkillers or gels help. I can't raise my leg to climb into the bath. Then 2 months ago I had another bout of GBS, this time in my face and arms which were paralyzed. I have trouble not knowing if I need to go to the toilet as there is numbness, and no feeling below. I live locked in my room in constant pain scared of falling. My partner told me I need some exercise and fresh air and I went so far outside I fell over after losing my balance. This GBS affects and has different meanings to people; some recover and some have long term problems like I have.

Comment from: chainus, 19-24 Female (Patient) Published: November 10

I was diagnosed as a Guillain-Barre syndrome patient at the age of 19 on June 20, 2016. I was shocked when I experienced this kind of disorder. At first I was confined as a dengue patient but after I was discharged from hospital I felt numbness and tingling sensation, I couldn't feel my feet, and had hard breathing and chest pain weeks after I was discharged. Thank goodness that I survived it and now I have my second life given to me. I am 20 years old now and I can say by the support of my family and friends I overcame my illness.

Comment from: Silverleaf Guy, 45-54 Male (Patient) Published: November 07

My symptoms with Guillain-Barre syndrome came on after an infection. My toes became numb as well as my chest and stomach area. One night I woke up and told my wife I could not breathe. After a battery of tests at the emergency room and conclusively determined by a lumbar puncture I was diagnosed with Guillain-Barre. I had 5 days of IVIG and within a week I was home. It is now 30 days and my back pain has passed but I still have finger and stomach numbness. What really helped me was forcing myself to walk up to 60 minutes a day. I am hoping within the next 30 days the numbness in my torso goes away.

Comment from: evagay, 65-74 Female (Patient) Published: September 06

I had a stomach flu for a week. The day after I was feeling better, but I had pain around both ankles. That was on a Saturday night. On Sunday they still hurt bad enough that I went to Urgent Care where I was diagnosed with neuropathy. I was put on gabapentin. I woke up on Tuesday, got up and almost fell down. My legs, mainly my right one, felt like rubber. I told my husband we had to go to the hospital. The neurologist confirmed my worst fear; Guillain-Barre syndrome. I consider myself very fortunate. My feet, legs, arms and hands are involved. It could be worse. I had 5 treatments of IVGG (intravenous gamma globulin). I had 1 week in the hospital and 2 weeks in rehabilitation. I am on day 41. I still have nerve pain in my fingertips. But I can walk with a walker. I am taking physiotherapy. I tire easy, but I will make a full recovery, I am determined. So will you!

Comment from: DKL, 55-64 Female (Patient) Published: December 21

I had Guillain-Barre syndrome 40 years ago. I had it in the 1970s and am now having weakness.

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.

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.

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.

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.

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.

Comment from: JoshBee, 19-24 Male (Patient) Published: September 10

I'm 23 years old. I was diagnosed with Guillain-Barre syndrome (GBS) about a year ago September 2014. Day 1 I felt numbness and tingling in my toes, day 2 I had numbness, pain, weakness and back pain, and day 3 I could barely walk. I kept on falling and couldn't get up. The general doctor suggested an MRI and blood work. All came back good. I went to a chiropractor thinking it might be a slipped disc. I was advised to see a neurologist who told me I probably have GBS (which I had no clue back then what that animal is). At my worst stage my hands and legs were weak that I couldn't use them. I had 2 weeks at the hospital, 5 treatments of IVIG and some physical therapy. Then I went to acute rehabilitation for a week. Today, a year later it is still hard to climb stairs, I can't run or jump, but thanks goodness I'm functioning. And to all of my brothers and sisters out there suffering, you will make it through! Stay strong!

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Comment from: DUTCHMAN, 55-64 Male (Patient) Published: August 31

On March 2, 2015 I went to the hospital as I thought I had a stroke (Bell's palsy, shakes, couldn't stand up, aspirating, etc.), and 4-5 days later found it to be Guillain-Barre syndrome (GBS). One week later I felt better but couldn't drive and had the shakes for about 1 or 2 months (5000 mg of B-12 helps daily). Then on July 4, 2015 I had an earache and started going deaf on the left ear, 2 months later it is getting worse.

Comment from: Mohamad Abbas, 45-54 Male (Patient) Published: August 27

Sense of Guillain-Barre syndrome began on August 30, 1997. It was a Wednesday and suddenly I felt weak in the legs and on Sunday I was starting to feel numbness in hands. I entered the hospital on Monday and stayed a week. I arrived to the point of paralysis and after I came out of the hospital began to improve. Today I went to the doctor and had examination of my nerves. I am still feeling the weakness in my left leg and my colleagues are noticing that laming is more than before. Thankfully no pain, but I have weakness.

Comment from: Fern, 55-64 Male (Caregiver) Published: July 13

I woke up one morning with one leg feeling slightly tingly. As time went on my leg got heavier, and then progressed to my other leg and then up to my abdomen. It took 1 week to get to that point. My both legs felt very heavy with not much control. I needed a cane to walk. I have seen a neurologist and after 3 MRIs and another specialist I was never diagnosed. I was 47 years old at the time and now at 64 I found out about Guillain-Barre syndrome. My neighbor contacted the syndrome and was diagnosed in 2 days. It was no doubt very similar symptoms to what I had. My ordeal lasted 4 months with little symptoms left. I was very lucky.

Comment from: Sgt2Dog, 55-64 Male (Patient) Published: June 04

I woke up paralyzed, unable to talk or move. I spent a little over 2 weeks in ICU. One year later I'm extremely tired, both hands and feet hurt, and I'm just learning to walk again, but fell 4 times in the last 3 months, breaking ribs and tearing my arms up. I'm 63 now, and very scared that I will have a relapse of the Guillain-Barre syndrome. I take gabapentin (you and your doctor will need to work together to determine the best dose for your needs) for the pain in my legs and hands, it does not take it a 100 percent away, but I can manage it most of the time.

Comment from: Bondo, 55-64 Male (Patient) Published: April 28

I awoke on my birthday with a very sore neck, and I made an appointment to see a chiropractor. By the time I got there, I was suffering from severe shoulder pain, weakness in arm, tingling in 4th and 5th fingers, and loss of grip. Doctor thought I was having a heart attack (I didn't think this). I spent 3 days in hospital, cleared of any heart issue. The hospital sent me home in excruciating pain. I made an appointment with and orthopedic doctor. He ordered an EMG test. The neurologist did not tell me what was going on, he wanted me to check back in with the orthopedic doctor, said I probably have cervical radiculopathy. Three weeks later, spine doctor said I have thoracic outlet syndrome. I had enough of the guessing and in extreme pain went to another clinic and the doctors there admitted me to the hospital immediately. Within 20 hours I was diagnosed with Guillain-Barre syndrome (GBS). I was put on 5 treatments of IVIG, and on the day after treatment the nerve pain started to subside. Now 1 month later I am still weak in the arms and fatigue easily. I exercise regularly. I can't understand why the neurologist's warning flag didn't appear, my EMG test was so bad he should have had me admitted to the hospital immediately. A lot of damage was caused over 2 1/2 months of misdiagnoses.

Comment from: Elena, 45-54 Female (Patient) Published: January 28

It was the day before New Year's Eve 2013, I noticed on my drive into work that I had severe pain in my knees, then by lunchtime I had numbness in my fingers and feet. I work in a medical office so I went for bloodwork that afternoon. The next morning when I went to get out of bed I could not walk. I called my boss crying and he said to call an ambulance immediately. By the time I got to the emergency room I could not walk at all and within a couple hours I could not swallow. I ended up intubated with a feeding tube, and in the ICU where I was given IVIG (intravenous immunoglobulin) treatment. I continued to decline and was then transferred to a bigger hospital out of town. I had severe back pain and was paralyzed from the neck down. When I got to the bigger hospital I was given a second treatment of IVIG. I was so out of it I was having severe, horrible hallucinations and could not speak to tell anyone what was going on. I remember hardly anything of my first month in the hospital but unfortunately I remember the hallucinations. I had to learn to swallow again; once I could swallow, I was allowed to eat real food. Shortly after that my tracheostomy was taken out. Slowly I began to regain use of my arms but still could not move my lower half. Once I got my mind back I requested to be sent back to my hometown for rehabilitation. Two days later I was there. I began walking with a rolling walker after a couple days there, then a couple days later I began walking with a regular walker. I was so excited to be on my feet! Don't get me wrong, I had to work hard at physiotherapy (PT) to get there! After 2 weeks I was released to do outpatient PT. So it was a total of 6 weeks in the hospital. They were not sure if I was going to live in the beginning but now I am back to my normal life. I do still have numbness in my feet and hands and lose my balance easily but I am glad to be where I am. Still not sure what caused my Guillain-Barre syndrome; I did have a flu shot 6 weeks prior to all this and I was not sick prior to the symptoms starting.

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Comment from: Invincible Mom, 55-64 Female (Patient) Published: January 22

Before being diagnosed with Guillain-Barre syndrome (GBS) by a neurologist, I had been experiencing numbness in my feet and calves since about a year after knee surgery. I had received a flu shot when all of a sudden the symptoms became excruciating. I had been told by my orthopedic surgeon that the injections they had given me indicated I had an allergy to egg protein. When my general physician suggested I have a flu shot, I told her about my allergy and her response was 'well, flu shots no longer have egg protein'. I later found out this is incorrect! I sought out the help of a neurologist who after spending an hour prodding, poking and testing, informed me I had a mild chronic case of GBS. That if it became worse, to call him. In the meantime, he prescribed gabapentin to help with the electrical current shocks that were rapid and frequent. After about 3 to 6 months, the shocks have resided and I have returned to my prior state. I continually get numbness in my feet, am tired a lot, chilled a lot, and in general ok. In the meantime, the neurologist would like me to remain on gabapentin to lessen the numbness. The medicines do help alleviate the majority of the pain. For your information, the doctors all state that my condition is not related to my surgery and the neurologist is convinced it is in fact GBS, however he does not want to put me through the pain of a tap. I have been told that if the condition worsens or returns, to seek emergency care as it may be a sign of intensified symptoms and risk.

Comment from: Krishna, 55-64 (Caregiver) Published: December 30

My father was diagnosed with Guillain-Barre Syndrome on Nov 24 2014. He had diarrhea a week before, when he just came back from a trip. His upper and lower limbs are affected, we were worried that it would spread to the respiratory tract, but luckily it did not. He was given IVIG for 5 days and was in ICU for that duration. He was moved to general room and was monitored for 2 weeks. During these 3 weeks (1 week in the ICU and 2 weeks in the general room), his muscle power started to decrease for first week and showed very minor improvement from then. It's now 5 weeks from the day he was diagnosed and the upper and lower limbs have very minimal power, i.e., he can only move them (slightly) in non-gravity but has zero movement against gravity. Doctors say he should have started recovery from 3rd week which is not the case. He is still doing 3 to 4 hours of physiotherapy daily.

Comment from: Lolakoi, 65-74 Female (Patient) Published: October 16

I had Guillain-Barre syndrome (GBS) in 1970, when I was 22 (I'm about to turn 67), after a brief respiratory infection. I was trying to move to a new apartment and noticed that the boxes seemed unusually heavy, until finally I couldn't lift an empty cardboard box! The next morning I could barely walk, and it went downhill from there. Within a few days I was on a respirator, totally paralyzed, where I remained for six long weeks. In 1970 GBS was treated with massive doses of prednisone; there was no plasmapheresis or IVIG treatment yet. I was in the hospital for 3 months and a rehabilitation center for another month learning to walk again, and then it took at least two years before I felt close to normal. I lost 50 pounds while ill, until my weight loss was actually more life-threatening than the GBS. Eventually I had a miraculous full recovery and have been very active ever since. However, in the last few years I've had increasing weakness and twitching in my left calf, especially at night. It can feel like a string of ladyfinger firecrackers going off nonstop in my calf. I had nerve conduction tests and there is residual demyelination and some axon damage in the left calf. Sometimes low-dose gabapentin helps, or I just take a Flexeril. I'm still an avid hiker! Overall I'm very grateful that it isn't worse.

Comment from: Melony, 35-44 Female (Patient) Published: September 26

At 20 years of age I had a sinus infection, had weakness throughout my body, numbness, and tingling in my hands and feet. I went to the doctor only to find that I had no reflexes. He contacted a neurologist who told him I needed to get to the emergency room (ER) immediately. The night before I was taken by ambulance to the ER and after several tests I was told it was muscular, given 2 muscle relaxers, and sent home. When I was admitted to the hospital I stayed in ICU for 3 weeks, was paralyzed for that long, I was put on a ventilator and feeding tube for this amount of time. I had Guillain-Barre syndrome (GBS) again in 2009 only not as severe. In 2000 I was told the reason I have trouble breathing is because one of my vocal cords was paralyzed from the ventilator being in too long. I've had a total of 5 surgeries to widen my airway and now I still get winded and light headed while talking for long periods of time. I was told that my pulmonologist had my ventilator in too long and that I should've been given tracheostomy.

Comment from: alabeaty, 45-54 Female (Patient) Published: September 05

I had flu/food poisoning to 3 weeks of nausea and upper abdomen pressure to stomach feeling fine and immediately numb/tingling feet, then calves, then knees then saddle region! Not cauda equina but it freaked me out. Brain and c-spine showed spinal lesions from post viral encephalomyelitis or multiple sclerosis. Neurologist is diagnosing Guillain-Barre syndrome due to recent viral incident coinciding with numbness but we are keeping an eye on it. Constant buzzing from waist down is annoying. I have weakness in legs and severe fatigue. I am taking gabapentin and GNC green vegetarian pack and extra vitamin D, 4600 UI a day now for a couple of weeks. My D level was 32.1. I am sleeping much better now which is very surprising. I think it is helping immune system and ongoing healing of nerves/spine. Left foot and leg are a little less numb. Legs in general are feeling a little stronger going up stairs. Buzzing continues.

Comment from: Ruthann, 65-74 Female (Patient) Published: June 02

In October of 2012 I woke up in the middle of the night with feet and hands that were numb and hurt at the same time. I could not walk. Thinking that I may be having a stroke, we went to the emergency room. One of the first questions I was asked was if I had had a flu shot. My answer was yes. Within a few days and after several tests I was diagnosed with Guillain-Barre syndrome (GBS). By that time I could not talk, or swallow, or breathe on my own. I was in the ICU for 3 weeks, on a ventilator, and feeding tube. I slowly began to recover. The left side of my face also was paralyzed. I spent 3 months in the hospital. I needed to learn how to swallow again, and eventually how to walk. It has been 19 months since I first became ill, I am able to get around with a cane or walker, extreme fatigue is part of every day, and numb tingling painful feet are what I am still experiencing. I am grateful for the amount of recovery that I have had, because I was not expected to live.

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Comment from: stokkecity, 45-54 Male (Patient) Published: May 30

I am currently recovering from Guillain-Barre syndrome (GBS). I"m a very healthy cyclist and fitness enthusiast who was convinced to take a flu shot in February of 2014. My first symptoms were a slight tingling in my fingertips and toes on March 8th, and by the end of the month, I could no longer stand up and bear weight on my legs. I spent 2 weeks in the hospital receiving plasmapheresis, and left the hospital in early April feeling strong. After three weeks, I had a relapse which landed me back in the hospital for two nights and a schedule of 6 out-patient IVIG treatments. It"s now nearly June of 2014. My walking is good, but my hand and arm strength is weak. I haven"t been able to work out or cycle yet, and recovery is very slow. My GBS never ascended higher than my thighs, and for that I am grateful. Feet and hands are still tingly and stiff, however. This is a very odd and frustrating condition for an active 52 year old. But, I am resolved to recover 100%. Currently taking no prescription medication but, wish there was something to relieve the tingle and buzzing. Fight on!

Comment from: mosaiclife, 25-34 Female (Patient) Published: May 19

My first symptoms of Guillain-Barre syndrome were tingling in my hands and feet, and a weird cold sensation in my mouth, like I"d been chewing mint gum. I went to my general practitioner, who had no clue what was wrong. A few days later I noticed weakness in my legs and fatigue (I was finding it difficult to climb stairs), so I went to the emergency room. They told me to see a neurologist, so I made an appointment. Two days before the appointment I went to another emergency room, and I was admitted to the hospital for high blood pressure (I believe it was 195/100). They did a lumbar puncture and found that there was excessive protein, so they did an MRI of my spine and brain. That"s when they diagnosed me with Guillain-Barre syndrome and began IVIG (that was 4/1/2014). By that point I could hardly walk on my own. I can walk on my own now, but I walk very slowly and struggle with balance. I still can"t climb stairs, and I can"t pick up my toddler son. However, I consider myself incredibly lucky that it was not worse.

Comment from: worried, 45-54 Male (Caregiver) Published: May 01

My husband was hospitalized for 10 days in 2013 with sudden onset of acute pain to his legs, weakness leading to paralysis (legs), and within hours involving bladder and bowel dysfunction. He was treated with IV steroids as they initially thought he had transverse myelitis. They did not do a spinal tap unfortunately. He was diagnosed by a neurologist a few months later with Guillain-Barre. Now past the 1 year mark he still has significant impairment - severe neuropathic leg(s) pain, urinary/bowel dysfunction (managed with medications), constant (minute) muscle twitching of the arms and legs even when sleeping, impaired balance, depression, altered sense of taste, and memory problems. He is able to work (self-employed) and to walk independently but relies on an electric scooter for long distances, i.e. malls. He"s unable to do many things that he used to enjoy i.e. golf, travel, walking. He"s on Naproxen and the maximum dose of Lyrica. His Cymbalta was recently increased to the maximum as well. I"d be interested to know of any other pain treatment options.

Comment from: Richard 10, 45-54 Male (Patient) Published: March 07

I must be in the 30% range of those who still have major problems from GBS (Guillain-Barre syndrome). I was diagnosed in February of 2013 and still today am disabled and home bound for the majority of the days. I still have chronic fatigue, tingling, muscle burning, and what I call electric shock. My motor skills are off just a little and my memory is off some as well. I am feeling a little better but still have sick all over feelings from time to time. I hope my story helps those in the 30% not recovering quickly range.

Comment from: blessed, 55-64 Female (Patient) Published: February 28

I am a patient who is being treated for Guillain-Barre syndrome. My first symptoms were tingling hands and feet and weakness in my legs. I went to the emergency room and they sent me home saying I was having a drug reaction to a medicine that my doctor had given me. The next morning I could not walk. I went back to the ER at a different hospital and was immediately told they thought I had Guillain-Barre and began treatment for this. They said Guillain does not necessarily show up in the first testing but will show up in the second. I was treated by taking out spinal fluid and given plasma over a course of 5 days. I had severe back pain with this illness, loss of leg function, and numbness below my arms. My arms were affected by limited movement. Also numbness in my face and mouth as if I had been given a Novacaine shot from the dentist. Luckily I began recovery rather quickly, full movement of my arms began about 3 days after treatment. I am 5 weeks into my diagnosis and I can walk without a walker. I have tingling in my fingers and feet still but feel like I am on a great road to recovery thanks to my doctors and my therapists. I do get tired quickly after workouts but feel that after more time this will improve.

Comment from: 55-64 Female (Patient) Published: February 07

I was diagnosed with GBS (Guillain-Barre syndrome) in April 2013 after having a sinus infection. I had had tingling in my feet for several weeks but ignored it. My symptoms began with a slower gait and a feeling of tiredness. The following morning I awoke with tingling over my entire body and loss of muscle control. I was paralyzed over my entire body. I was in ICU for 27 days and rehabilitation for 15 days, plus an additional 8 weeks of outpatient rehab. I received 7 immunoglobulin treatments, osteotherapy and physiotherapy. I had a tracheostomy and a feeding tube. I still experience tingling in my hands and feet and deal with fatigue daily. I am learning to be more patient!

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Comment from: RMForbes, 55-64 Male (Patient) Published: January 31

I have minor double vision, tingling in the feet and hands most noticeable at the toes and tips of the fingers. I also have problems walking because I can't balance myself. I got out of the Veteran Affairs hospital just two days ago. I was diagnosed with the Miller-Fisher variant of Guillain-Barre syndrome.

Comment from: Steve, 75 or over Male (Patient) Published: January 27

I am a retired gynecologist. A number of weeks after a flu vaccine I awoke at 2 AM with severe low mid back pain. By 6:00 AM I called 911 thinking that I had a posterior wall infarct. Cardiac workup was normal so I was discharged home with nurses for three days then I had rehabilitation and assisted living for three months. I also had numbness and tingling of the hands and feet as well as progressive leg and arm weakness and paralysis. Misdiagnosed for 7 weeks with no help from pain medicine, I needed a wheelchair. My family was told that I had dementia and arthritis (no previous history of either). Finally I saw a neurologist who made the diagnosis of Guillain-Barre syndrome. Of course I was finally getting better by then. (Nov 2011 - Feb 2012). I should mention that Medicare did not cover anything since I was only in the hospital for 2 days under "observation" Now two years later, I have had a three week history of unilateral, unexplained arm and leg muscle weakness and pain which I suspect is secondary to the statin, Lipitor.

Comment from: paulina, 45-54 Female (Patient) Published: January 14

I contracted Guillain-Barre syndrome (GBS) about 6 years ago. It started with the most severe pain in the center of my back. I was rushed to the doctors daily. They were totally baffled. No pain medications worked. My blood pressure shot up to 175/135, I got Bells palsy on the right side of my face. Still they could not figure anything out. The pain intensified, my legs gave way and I went daily to emergency room and doctors with still no answers. Finally my legs went numb and blood pressure raised even higher. I was finally admitted to the hospital as they feared a severe heart attack was about to happen. I was put on pain medications which didn't work. After 2 weeks in hospital they did a spinal tap and found out it was GBS. It was a difficult road to recovery. I used a wheel chair, walker and cane but only came within a hair of being put on a respirator. I have been back at work full time for 3 years, life is difficult but doable. I am still very weak and tired and still have some back pain.

Comment from: Denise, 35-44 Female (Patient) Published: December 16

My symptoms began in September 2004. I had a severe sore throat for 2 days, then a pins and needles feeling in my fingertips. Then I had weakness in my legs. I was misdiagnosed 3 times by a doctor in my town. He kept saying I had rheumatoid arthritis. I was finally seen by a neurologist who knew what I had. I was admitted into hospital right away. Lumbar puncture confirmed it. Within a week I was paralyzed from the neck down, I could only turn my head. Then after 2 weeks I crashed, I had a feeding tube and tracheostomy put in. I was on the ventilator for 7 months and was told I would never get off. I did after seven months. I am still paralyzed. I was in 4 different hospitals for a total of a year and a half, then did 6 months of therapy before I could walk again. It is very hard on my family. Not enough is known about this horrible disease! I still have weakness and exhaustion issues. You learn to live with a new kind of normal.

Comment from: Miro, 35-44 Male (Patient) Published: December 05

I am 43 and just experienced GBS (Guillain-Barre syndrome) on 1/12/2013. It started in my toes and raced all over my body except the right side of my face. After 6 visits to my general physician telling me to toughen up, it's only a pinched nerve in my back, my wife raced me to hospital emergency room. I was admitted instantly and was looked after. I had all the tests and a lumber puncture and then had an Intragram blood infusion for five days. After 4 days more in hospital I went home. I am having physiotherapy at home at the moment and my strength is getting better day by day. I plan go back to work as soon as I can walk a good distance without getting tired. I still have numbness in my legs, feet, arms, back, mouth and hands.

Comment from: #Khoasen, 55-64 Male (Patient) Published: November 14

I was diagnosed with GBS (Guillain-Barre syndrome) in April 2012 which was very severe. It started with severe diarrhea, running stomach continuously for three days. I was feeling very weak in my body and was hospitalized for stroke and transferred to a private hospital where a very efficient specialist detected that my nervous system was breaking down due to GBS. He immediately took out a spinal test and took me into the ICU for emergency treatment. My whole body was paralyzed and I could not move. I was hospitalized nearly for two months doing some physiotherapy.

Comment from: stuart, 65-74 Male (Patient) Published: October 18

I'm certain my GBS (Guillain-Barre syndrome) was triggered by the flu vaccine. I'm rarely ill and was in fine health when I decided to go for my first ever flu vaccine in October 2012. Within a few weeks I was experiencing back pain and tingling down legs and it was getting harder to put one foot in front of the other, I kept falling down as MY legs couldn't seem to hold my weight. I visited the general physician and Accident & Emergency repeatedly but kept getting sent home with the offer of physiotherapy. I eventually went to the hospital in January 2013 and was there till end of March. I lost use of my legs totally and couldn't grip anything with my hands and fingers. I had a lumbar puncture which confirmed what it was. It is a horrible thing to go through, you feel so helpless and frustrated. I had physiotherapy daily and hydrotherapy weekly which helped immensely. I am walking with a stick now but there is still not much feeling in my hands or feet. I keep walking out of my slippers without knowing I've done it. The other half keeps finding them separated in different rooms of house… you've got to laugh sometimes.

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Comment from: Rezi, 25-34 Male (Patient) Published: May 05

I am 34 years old. This is my second time suffering from Guillain-Barre syndrome (GBS). Now I live in a fear every day and every night. First attack was in 2002. After 13 years it came back to me in 2015 again. Now it has been nearly a year. I am improving very slowly and strength and muscles are gaining very slowly. I had treatment of 5 IVIG (6 days) both times, which is very expensive here in my country Bangladesh. I paid for IVIG only, USD 18,000 plus hospital cost about USD 5,500 this time. But first time was a bit cheaper. First time I spent about total USD 10,000 in the year 2002. And all pains are bonus! I feel it is better to die rather than face a 3rd attack. This is my GBS life.

Comment from: Patty, 55-64 Female (Caregiver) Published: April 15

My husband had Guillain-Barre syndrome (GBS) 2 times, once in 1995 and then in 1997. He has recovered, with the residual fatigue, tingly legs, and no strength in hands and feet. I have noticed memory issues in the past year or so, possibly related to GBS.

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!

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.

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.

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.

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!

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.

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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Comment from: vip, 45-54 Female (Patient) Published: December 21

I got GBS in Sept. It started with numb fingers a couple days later the numbing went to my feet. I had horrible back pain in the middle of my back, my tongue went numb. Went to Doctor about 5 times in two weeks. Went to emergency they didn't find anything wrong with me sent me home three days later lost all control of my body I couldn't lift myself. Went back to hospital they did lots of test finally nerve conduction test proved GBS. Was in hospital a week. It's been a long slow recovery. Three and half months into it and I still can't do a lot of things get tired very quick. I am still walking with cane my feet and hands are very numb. I do PT, OT and Acupuncture every week. But I do feel like I am getting stronger every week.

Comment from: Molly, 65-74 Female (Patient) Published: December 19

I developed GBS 6 years ago about 5 weeks after a flu shot. I experienced severe weakness starting in my legs and eventually affecting my arms and hands. Other symptoms included extremely blurred vision, choking when attempting to swallow, severe headache and pain which progressed to an unbearable state in my back, legs and arms. I live in an area where there was no treatment available and only one MD out of the 7 who saw me in the local hosp. diagnosed the problem. As a result I have been left to my own devices regarding recovery and exercises. It has been a trial and error process. I still suffer from pain and weakness in my legs, arms and hands which has not improved in quite some time. My life has been devastated as far as being able to physically do just about any activity I formerly enjoyed. I realize having GBS is a rare occurrence, but I would admonish the professionals who know and deal with this terrible syndrome to push the education of the medical people in the field so they can better treat and diagnose those who contract it.

Comment from: chaosowner, 35-44 Female (Patient) Published: November 02

I contracted GBS 11 years ago. My arm felt "numb" like it was asleep. By the next day it was in the other arm and I had weakness in my legs. Went to the ER they had no idea what was wrong and ordered me to a neurologist who luckily had seen this before. A spinal tap was done along with very painful nerve conduction tests. I was in the hospital for a week for observation. The numbness reached my torso and elbows. I still have trouble doing very fine motor skills with my hands. The nerves regenerating was very painful. I would not wish this on anyone.

Comment from: Jane, 55-64 Female (Patient) Published: September 30

I had GB 16 years ago. A very frightening experience, started with tingling/numbness in legs and feet then the trunk. During the second week the left side of my face was paralyzed causing me to look as if I had had a stroke. It took at least 6 months to get back to normal but I still have a slight paralyses in the face and still have a numbness in the left leg. Don't think this will ever recover. Don't wish this condition on anyone.

Comment from: sunshine, 45-54 Female (Patient) Published: March 22

I had Guillain-Barre when I was 16. I am now 45. Mine started with feeling as if I had the flu. I had no appetite and felt really bad all day. The next day, I had no strength. I remember being on the floor changing my baby sister's diaper and couldn't get up. I had to use the couch behind me as leverage to push myself up on it. It took every bit of energy I had. I was taken to the doctor that day and was lucky that the doctor had seen this before. I also remember that while in physical therapy, someone came up to tickle my feet and I couldn't feel a thing. I was in the hospital for two months. I wasn't paralyzed. I could move, but I couldn't stand. I had to learn how to walk again.

Comment from: why me, 45-54 Female (Patient) Published: February 17

With my Guillain-Barre syndrome, I experienced the feeling of pins and needles in my hands and feet for 24 hours, then paralysis in my whole body and weakened breathing. My vision was impaired for a short while and my face looked as if I had a stroke! It was the worst pain I ever experienced all over! I finished off with twitching muscles and made a full recovery within two months. Now it's back to work in nine months!

Comment from: nurseweiss, 45-54 Female (Patient) Published: January 23

With Guillain-Barre syndrome I could not move at all. I had to learn to walk all over again and feed myself.

Comment from: Jack, 55-64 Male (Patient) Published: May 30

I was very young when I had Guillain-Barre syndrome. I was at the children's hospital and in 1967 they had a hard time treating me. They had no idea of what it was. Recovery took 1 month in hospital, I was slow to get back balance and to be able to walk. I was able to fully recover. I have had a normal life with full use of body, I work on heights better than normal balance, ride a motorcycle, and ski. The best treatment was swimming that summer.

Comment from: Roger, 55-64 Male (Patient) Published: June 12

I am still struggling with GBS since May 13,2012. I was totally paralyzed and on a vent for 3 months in icu, I had a collasped lung, blood clot in my chest, pneumonia twice during that period. I spent another 6 weeks in another hospital for physical rehab. When I left there with a feed tube and in a wheel chair to a nursing hone for another 6 weeks. I am little by little trying to get my life and health back. I will never be normal again.

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Comment from: anonymous, 45-54 Female (Patient) Published: February 01

I was fighting a urinary tract infection and a sinus infection in September. I woke up Monday am and got ready for work. I remember feeling so weak and out of energy it took me forever just to get into the shower. I got to work but could barely walk. I went home and went to bed. I couldn't get out of bed for 2 days. I became dehydrated and couldn't stand. I went to the ER in a small town and they couldn't figure out what was going on. I became paralyzed totally, on a ventilator and with a tracheostomy for about a week. I was transferred when I needed intensive care to a city hospital, who was able to diagnose me after a spinal tap. I was in the hospital/rehab care facility for 3 months. I am finally home and can walk with a walker and use a wheelchair for long distances. I still get painful tingling pains in both feet and my left hand. I hope this gets better. I can't work, and am waiting on social security to help us.

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.

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!

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!

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.

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.

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.

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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Comment from: waldenlyn, 35-44 Female (Patient) Published: July 18

I was diagnosed with Guillain-Barre on June 16 and still numb in feet and hands and left side of face affected alot on pain in feet and back some days worse than others.

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