gillian barre

Monday Oct. 31 my 62 year old grandfather went out of character and went to a hospital. He was sent home on Wednesday as his physician diagnosed him with stroke like symptoms and ordered him to see an eyes nose and ears doctor. He was talking very quick and blurry and had no bass to his voice what-so-ever. His doctor told him that when he puked up his orange juice when his stroke set in, that it must have done something to his vocal chords. I picked him up that evening and drove him 80 miles to Vanderbilt Medical Center. His motor functions were so bad that he could not hold his eyes open as we got on the interstate. Once on the interstate he immediately suffered motion sickness. I pulled over, and we were on our way again within 5 minutes. I called the hospital ahead of time so thay would know we were coming and so that they would be looking for us. We arrived at VUMC @ 9:10 pm. He was so sick I have never seen anything like it and probably never will again. He was telling the doctors in the er that it wasnt a stroke, i was telling them it was because thats what his physician said. He had no balance, couldnt feel his hands, could barely even walk. They released him at 4 am telling us he had a TIA(mini stroke). -Keep in mind now that the whole time this has been going on (since mon) his blood pressures were off the charts. Especially when he was on his feet.- and especially when he was released from VUMC. Thursday passed and Friday morning my uncle took him to a scheduled appointment. While there they discovered that it was impossible to get his blood pressure down. It was crazy high. 199 over 109. They immediatly took him to another hospital. He has been there ever since in ICU. On Sunday they ruled out a stroke. Monday they reviewed all info from all doctors involved and on Tuesday they did a spinal tap revealing this guillen barre. If more people were knowledgeable about this disease it might have saved my pop a lot of pain and suffering. We are now worried that since it was not found and treated within the first week that the effects will be devastating for him. I have seen this virus first hand, i know what it does before treatment. More people need to know. My grandfather had every single symptom of this disease that is listed. any questions. just ask

Hi my dad has GBS he is in Iowa and I am away at college..I Found out about 2 months ago. The DR's in our one hospital ran a few tests -diagnosed- did a blood transfusion and gave up...and so has my family. I am not going to- I will find a true treatment- after reading many of your articles i have hope..any additional info would help me out so much.
E-mail me please.
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I had infertility surgery, Laparotomy & Hysteroscopy about 3 months ago. After the surgery, I felt numbness in my legs and my stomach. This has recently gone away; however, I now have an electrical sensation that moves from my stomach to my toes when I move my neck forward. I have visited an neurologist and she is convinced that it is CIPD, a chronic stage of GBS.

I am going for MRIs next week to be sure what the problem is – my finance and I have been trying for the past two years to have a baby – but no luck. Now I read that this disease or syndrome causes infertility. Has anyone else heard this?

hi . I am 43 yr old male , family man , paint contractor. This all started back at the end of april . I was having prostate trouble , for about a week , and could barely walk . Saw a doctor , who gave me medicine for the prostate prob. , but within a week i was in the hospital . I cant even remember going . I was pretty sick , could barely walk . After being administered , I went into a coma . for a week , and was on life support . I finally came to . and was totally paralyzed from the neck down . I had completely lost my memory at this point , didnt even know my own wife , my brothers , my mom . I eventually regained my arms , then my legs .
I went from a wheelchair , to a walker , to now a cain . I still go to physical therapy , and work out as much as I can at home each day .
After 6 weeks in the hospital I got to go home ! I ,within a couple days could remeber everybody , but still to this day cant remember one day in the hospital . All i can remember is going to the doctors just before the hospital . Now its been 7 months , and I am progressing pretty good .
My brain is functioning pretty normal . I see flashes , or tracers every so often . My short term memory is still short , but I do believe it's increasing . My legs are the most difficult part still , especially first thing in the morning upon first waking up . Usually after a couple cups of coffee and especially a bath , they feel much better . My feet still feel tingly , and sometimes kinda numb . My toes hurt a little bit when i go to bed .
One thing I've noticed is that when I sit down for a long period of time , the longer I sit , the worse my legs are for a while .
I've been seeing a new doctor for the past month now . He's excellent to me . Got me on cymbalta , for depression , he put me on vicodin to help with the pain , as I work on rebuilding my muscle strength , and it helps with the pain in my feet as well . Thank god for him . He is the one who made the determination that I had gbs .The hospital did not . They just wanted me out of there . Anyway , if anyone out there would like to reply to me , please be my guest . I would like to convers with someone else who has , or is experiencing the same trouble . All I know is that i must keep on pushing every day , and try to keep up my spirits . Lucky for me I have a very beautiful , compassionate wife , who has been with me all the way through this . She is such a comfort to me . Also my 2 beautiful children , have been at my side through this as well . I will do my best to beat this thing .Please reply
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I had guillain barre syndrome at the age of 24. It came on really fast, one day I was fine and the next my feet started to tingle. I was very thin then but figured I needed to excercise, so I started walking. It continued to get worse then about a week after that I woke up one morning and my hands started to tingle and I had a horrible headache. I was out of town training with Pacific Bell at the time and was real scared. I did not understand what was happeing to me. Then I fell and could not get up without help. Was driven home and went to the doctor luckily he already had 5 patients with the same illness. He came into the examinging room to tell me "Don't worry I've only lost one patient to this illness." I started to cry. It took 7 weeks for me to fully recover. I am now 55 yrs old and have had no reaccuring symtoms at all.

my grandmother had GBS about 15 yrs ago, I was cleaning her house when suddenly she said"I can't walk" I got her to the hospital and within 2 hours she was totally pariliazed from the neck down to her toes. She luckily was able to breath, but she never totally regained use of her arms and legs. It was a very acarey time for the family

hi, i am a 12 year old kid and i hade the sik ness. i thout it was help folle to now what i had.

i am 12 years ol and thiss is my 2 time to deal with gbs the first was when i was 4. every one says its a miricle that im still alive. the doctors are baffled to see this reacurence. im writing this from the hostpital ive been in for 2 months so far and i find talking online like this really helpfull. thankyou. :-D

My aunt was hospitalized in October 2006 she was in there a few weeks before being diagnosed correctly. She has been in a Nursing Facility since February or March. I don't believe she is getting the appropriate care for her recovery. She has been hospitalized for 7 months now. Her condition was very severe, she is now able to talk and can eat by herself(without feeding tube), but some one has to feed her. She has minimal movement in her hands, wrists are very weak. She has minimal movement in her legs. Spine is very week and she can't support her body. Not one doctor has been in to see her since she went to the nursing facility and she only has physical therapy 2x a week. I don't think this is enough and I think she needs a doctor to overlook her care. Can anyone who has been through this help me and let me know how their recovery went. We are at a loss. She has been in the hospital for over 7 months. I think they are wasting precious time. I am only 4 years younger than my aunt and we have children the same age. She needs to go home to her girls. Please Help!!!!!!

I went to India on a vacation in Feb. 2007 and when I got back I was feeling weak in my legs and arms. I didn't bother with it for a couple of days thinking that it was just a jet lag. After 3 days I started falling and had to go the hospital. Docs there figured out that it was GBS and perhaps casused by a viral infection in the digestive track. I was in the hospital for 2 months and have been on rehab eversince. i was given 5 doses of immunogloblin over 5 days and that seems to have sent me on my way back to recovery.

I had no strength left in my arms and legs, however it had not progressed to my respiratory system, lucky.

It has been 8 months and I am still weak in my legs and feet. My arms and upper body is at about 80%. My hands shake a bit and more when I am tired. I have been doing heavy excercises for the last 3 months and I have noticed that it is starting to help me quite a bit.

If someone wants to get hold of me my e-address is _[removed]_

Vin Sahota[/url]

I was diagnosed 6 yrs ago. They said it is a one time thing, but they said lots of things that turned out to be untrue. They really don't know a lot about it. I am currently fighting my worse relapse yet. I told my (new) doc I'd volunteer for studies/research. He says there will never be long term research, as there aren't enough of us to make it financially profitable. I love an honest doc! lol Luckily, mine is great, but has only had 1 other GB patient.

I was diagnosed with GBS 6 years ago, after coming back from a trip to Central America. No one could tell me to this day, as to how I got it. Some Dr.s claimed a virus caught in the rain forest, improperly cooked pork, pesticide spray on the plane, etc.

After coming back to Toronto, it was about 3 days and had severe diarrhea, fever and muscle spams followed with fatigue. One day I woke up in the morning and could not walk and had no strength in the arms, legs and specially the hands. I was told that my case was so severe that I would never walk again. I was treated with immunigloben and had a spinal tap to see what was wrong with me.

All the diagnoses were discouraging and did examinations in a couple of hospitals which I can best describe as torture! Painful and at the end of the day could tell me very little.

To make a long story short, I was able to recover fully by doing lots and lots of physical therapy during the early stages. Within a month I was walking (with a cane) and within several months of intensive therapy I was able to walk properly without assistance. I was 28 at the time and I think age, a positive attitude and lots of effort and faith allowed the recovery. I still get fatigued but nothing overly extraordinary.

The neurologists suggest that I do not use the flue shot and I still get spams once in a while but had never had a relapse. We were told that there would be no relapses, but they also said I would never walk. St. Michaels in Toronto seem to know a fair bit about this monster.

Good luck and don't give up for those that have it. For those that have family with this illness encourage that they do as much therapy as possible.

Hi my name is Barbara and this is my story. This is how I became diagnosed with GBS. I had my first child at the age of 29 in March of 1998. After her birth I was left with allergies, asthma, cronic broncitis. I had a lot of weekness in my legs and arms. At the time nobody thought anything of it. In March of 1999 I became pregnant with my scond child. The pregnancy was great for the first 4 months. I was taken out of work due to my asthma and extream fatique. As the time past I became very weak with headachs pain in my legs, arms and hands. When I was 6 mnths along I began to loose feeling in my legs and fell several times due to this. I started feeling sever burning in my whole body. I could not were cloths or even have a blanket cover me. Mind you I was 6 mnths along and pain medication was not an option. My OBGYN thought the baby was resting on my syadic nerve. My physichan who treating me for asthma thought maybe I should see a Nurologist and made the apt. There was only so much testing he could do being I was 7 months at this time. He felt I had a dymytateing nuropothy which I did not know what was. My OBGYN did not beleve this to be true. At 36 weeks and I could no longer walk on my own the Nurologist felt we should think about a c section. We fought to do this with the OBG. and finally at 38 week I deliverd, natural at that, he wouldn't do a c section.After delivery I was paralized from the waist down. I went to another hospital for a spinal tap and my new baby went home with her father. The spinal confirmed I had GBS. I went through the IVIGG treatment without success. I went home for a week and returned to the same hospital for another series of IVIGG treatment. I was there for 2 weeks followed by rehab for and additional 2 weeks. This did not work after being bedridden and unable to do anything for myself (lets not forget I had a new baby I could not care for, hold, feed or nurtuer) I was very depressed. I had inhome care. My therapist felt we were not getting anywhere. After 3 mnths of this they decided I needed Plasma Pherysis. I went to yet again another Hospital and had 10 days of treatment. After that to a Rehabilitation Hospital where it took me 2 months to learn how to walk, dress and take care of my self. It was a long hall, they told me prgnancy could not induce this disease. Now they know it does. To this day I have many problems with residual, Fibromyalgia, and Pollynuropothy. I am still fighting my battle. I would like to know if anyone out there has any advise? I have a lot of questions I feel may not have been answered like can I pass GBS to my child I was pregnant with at the time this all took place. Do I need to worry that someday this can happen to her.

My wonderful son in law had this in the service and was discharged from the service because of GBS. Fifteen years later, we took him to the hospital tonite as the paralization is setting into the facial area. He has had a cold for about two weeks that would not get better and now of course we believe it was viral. The Veterans hospital in Gainesville (3 hr drive from where we live) sent him home yesterday "until things get worse". I cannot believe the way this country treats it veterans. Now he is without insurance and fighting for his life in a local hospital. If anyone knows more about a second bout with this disease, please e mail me at _[removed]_m. Is it as bad as the first time? It cannot be worse, we almost lost him.
God bless.

I am presently 55 yrs old and in 2000 I had a flu shot along with other staff members at work. The nurse was 2 shots short so she went to the local pharmacy and got 2 more for us. Myself and another co-worker were given the shots and within 24 hours we both felt awful. At first we thought it was the flu or a cold so we were both put on antibiotics. We never did get over it and by the following February were both having bizarre symptoms, by April it had started to take over. Muscle spasms in muscles we didn't even know we had, headaches, contstant pain, memory loss, disorientation, staggering, and then bedridden. I thought I was losing my mind, dying or both. At first I was diagnosed with Parkinson's Disease and her with MS and no matter what we said, no one would believe it was the flu shot. After three years of tests after tests, we were finally given the correct diagnosis of residual GBS but unfortunately I have relapses on a regular basis. The worst of it is the muscle spasms where the muscle knots up and creates a grapefruit sized lump that takes about 15 - 30 minutes to calm down but not without horrendous pain. These can occur anywheres. Twice I have had whole body spasms where every muscle in the body spasms at the same time. That was fun, scared the heck out of my husband. All this from a flu shot. It was discovered in 2001 that approx. 1100 vials of the flu shot had been tainted due to a problem with the preservative. Yep. We were 2 of them. Doctor say it wont get any worse but will just feel worse as I get older. Sorry, just needed a place to vent.