My encounter with Gillian Barre Syndrome

Hello everyone. I am 16 years old and was diagnosed with GBS when I was 14. It is very horibble and haunts me still. My sister is diabedic and takes 4 insulin shots a day and often has complications. Whenever I tell someone that I am very weaak and I am finding it very hard to brathe, they igonre me and say how much harder my sisters life is. My GBS was very severe when I was diagnosed, I was close to death and I was so scared. I am still very weak and fatigued. I just wanted to know how other people are doing with this disease

My name is Jennifer. I'm 32 years old. I had GBS when I was 17. I woke up one morning and had a tingling sensation in my little finger on my right hand. Really didn't think much of it at the time. The next day or two the tingling was in all my fingers and my toes. I knew I was in trouble when I couldn't feel the brake peddle in my car. I couldn't hardly pull myself up a flight of stairs. I told my grandpa I thought something was wrong with me, so he made an appointment to see the doctor. My doctor asked me if I had been sick recently. About a month earlier I had the flu. He told me to put it on the back burner that this might be symptoms from having the flu and if I didn't start feeling better in the next few days to come back. Big mistake. The next day, I woke up and the right side of my face was paralyzed. Freaked out, I went straight to my doctor and he had me admitted to the Intensive Care Unit. He said it sounded like MS to him. Well it wasn't. They tested me for everything, HIV, Limes Disease. They did spinal taps, X-Rays, MRI's, blood work after blood work. I looked like a junkie when they finished with me. Three day's later they came to the conclusion, I had GBS. They told me there was no test for it, they just had to rule out everything else and thats how they came up with this. They called it the evil twin of MS. But by this time I couldn't walk, go to the bathroom by myself. They started Plasmapheresis. I did this three times a week for three weeks. Then they sent me home. Go back to my normal life like nothing ever happened. Another big mistake. A week later I was back in the hospital unable to walk or go to the bathroom by myself. I had a relapse. My parents, extremely upset with my neurologist wanted to take me to a better hospital. The next day I was on my way to IU medical center. They started the Plasmapheresis again and this time I had physical therapy everyday. Something my doctors in my home town left out. I was there three weeks or so, until I was strong enough to go home. I was in a wheelchair for two months, a cane for a while. It took me over a year to completely recover. I still to this day have extreme weakness in my legs, my arms and legs fall asleep all the time and I have a lazy eye. After reading other peoples stories, I guess I was pretty lucky . The doctors say my age had a lot to do with that. They said the older you are the harder it is to get well. Take care everyone.

Hi, I too am recovering from GBS. June 4, 2006 I woke up with 2 of the fingers on my right hand numb, I thought I had slept on my hand. I was very weak the entire day. As the day progressed the other fingers on that hand became numb, and it started traveling up my arm. Within 24 hrs I could no longer use my right hand and arm, and the left hand became weak. I went to see my Dr. and he did not seem concerned and set me up with different tests for the next 4 days, and sent me home. By this time I was only able to use my left hand a little, and was having trouble feeding myself. I went to emergancy room but was sent home by the Dr. there saying it was not life threatening and to go home, but to continue to go in for the test my Dr. set up. My 15 yr old daughter bathed me, took me to the bathroom and dressed me, even scratched my nose. I had strange electrical shocks going through my body often.One week to the day I went back to emergancy room and demanded to be admitted, I was having trouble walking and felt I would be paralized before the day was over. A nurse in the hospital told me what she thought was wrong, GBS, but my Dr. did not think so, but the spinal said that in fact it was GBS. I was in hospital for 3 weeks, and I now walk with cane and am very weak still. Five months before this happened i had been seeing my Dr. because I was unbelievably tired and kept falling. This did not concern him either.

sewgood

In GBS, the onset of the syndrome is rapid, the myelin sheath and sometimes the axons are attacked anywhere from the first week to the fourth week. This sounds very much like your June 4 encounter. However, If you became tired and were falling months before that, there could be a possibility that CIDP should be considered (this is the chronic version of GBS) CIDP has a slower onset.

As a basic description from the GBS/CIDP Foundation International as follows:

Quote:

How is GBS Diagnosed?
Quite often, the patient's symptoms and physical exam are sufficient to indicate the diagnosis. The rapid onset of (ascending) weakness, frequently accompanied by abnormal sensations that affect both sides of the body similarly, is a common presenting picture. Loss of reflexes, such as the knee jerk, are usually found. To confirm the diagnosis, a lumbar puncture to find elevated fluid protein and electrical test of nerve and muscle function may be performed.

Quote:

How is CIDP Diagnosed?

The CIDP patient typically presents with difficulty walking which progressively worsens over a few months. Tingling or other abnormal sensations may also be experienced if the patient’s sensory nerve myelin is damaged. Physical examination will usually show loss of reflexes, such as the knee and ankle jerk. Evaluation by a neurologist will often include an electrical test, a nerve conduction velocity-electromyography study. It shows slowing of conduction of electrical signals or even blocked conduction. A spinal tap, to analyze cerebrospinal fluid, will typically show elevated protein with normal cells to help confirm the diagnosis. Patients with variants of CIDP, such as multifocal motor neuropathy, may only show slowing of conduction in some motor nerves to muscles. Your doctor may obtain blood and urine tests, including analysis of proteins, to look for causes of CIDP.

Hey how tyou doing, I am 26yr old Male. I went thorugh the pain, andger and depression of havening GBS at the age of 22. I spent a whole year in the hospital and another 6months in rehab just to try and get back to normal function of everyday living. I had a very severe case, and just like yourself I wondered why, why, why me. Even though I was almost not here to tell my story to people . I try to liver my lifr more full of other thing than work everyday. Even thought GBS has ruined my life totally, and has me in debt for the rest of my life for Dr. bills. I am still here to tell story and live another day

? i have a 31 yr old friend who just recently died out of the clear blue, he was in the IUC of a philadelphia hospital, taken down for an MRI and died. the family recieved a call from the hospital and they were told that his heart stopped. the docter and family agreed that an autopsy should be preformed since my friend was so young... from what i have been told my frend was unable to move, he was in a paralyzed state and only able to blink his eyes. the docter did mention to the family that he possibly suspects GBS but here's my question. .....can your heart stop? the family keeps saying that he was depressed, well there's got to be more than that. is depression a symptom? my freind went from 250 lbs to about 170 lbs in a matter of 3 months. does the disease affect your appetite? my friends and i are very confused and shocked that someone so full of life is gone. anyone have any clue?

:'( Hello, I am a 27 year old female from Huntington WV. I also have had Gillian Barre Syndrome, it happen April 19, 2000 I was 20 years old. I had a cold and just thought that it was a normal cold as always and didn't really worry about it just went on working and doing everyday things. I started having numbness in my toes, over a period of a week I was paralysed, I couldn't open my eyes, I couldn't eat or drink it was going straight in my lungs. My mother took care of me the whole week she had me to the ER three time the told me nothing was wrong and that I need to stop acting like that because nothing was wrong with me. She took me to a local clinic twice they said the same thing. I couldn't walk I couldn't sit up I couldn't hold my own head up my mom held my head up for me I could only whisper. Finally on that last day before I was put in the hospital my mom was very upset by this time because she couldn't get anyone to do anything for me so she had my sister and her husband to come and take care of me so she could go to see my granny. Well, I remember I was laying in the livingroom and I was having a really hard time breathing and I looked at my sister I told her that I couldn't fight no more I was to weak, that I knew I was dieing! At that point my sister told me no that I had to keep fighting that I was going to be ok. she called an Ambulance to take me to the hospial, then called my mother and told her what was going on my mother came straight home.. I can barely remember my mother telling me that she couldn't lose me that I had to keep fighting that I was strong. I told her that I would try but I did't know how long I could! They got me to the hospital and My breathing was alot worse I remember my sister sitting by my bed and she ask me if I was ok I told her no that I could breath she got the nurse and everything went black I STOP breathing.... When I woke My mom and dad was sitting beside me and the room was full of people "family" they was all telling me that I would be ok now that they had put me on a VENT and that everyone was praying for me and for me to just put everything in the hands of god and that he would make everything better. So I did just that! ( it is getting very hard for me to type this and to just even go back to that time. I never want to go through anything like that ever again! ) None of the doctors knew what was going on they had no clue! THANK GOD they called in doctor Tweel as soon as he looked at me he said that girls has Gillian Barre Syndrome. He said we will do more test to make sure that is what is going on but, I am positive that is what it is. They told mom she was lucky she got me there when she did. they took me to ICU and told mom it would be around 9 months before I would get off the vent, and believe it or not I was off it in 13 days, on the 15 day I was taken out of ICU and then but May 17 I was taken to rehab I was in rehab till June 8th and but then I was walking again. I was just alittle weak I was sent home YES lol on a cane. :-D Today I am a normal person again besides just the longterm problem of depression I am scared to death of getting it again and then just the fact of talking about it or just thinking of it I can't handle it I just brake down. I am married now to a wonderful man and I have two loving children that mean the world to me.... That is my story of having GBS and Living through it THANKS TO DR TWEEL And THE DEAR LORD ABOVE to tell you my story of GBS

i am a soldier in the us army and one day i started feeling the symptoms and had no idea what was happening i ended up in the hospital and i only got it up to my hips in my arms and my face and stayed in the hospital for 2 weeks and then moved on to rehab where i had to learn to walk again i'm doing good now and the feeling is starting to go away but trust me they may say "you may not walk again" thats BS i know 2 other people who had doctors tell them "you will never walk again" but one is a physical therapist and the other is a marathon runner no joke so hang in there and you will pull through

HI,
MY NAME IS TWILA ANN ARNOLD,
3 WEEKS BEFORE I WAS DIAGNOSED WITH GILLIAN BARRE, I WAS WORKING , AND MY BACK STARTED HURTING REAL BAD, THOUGHT I NEEDED TO GO TO THE CHIRAPRACTOR, AND GET IT FIXED. THEY PUT IT BACK IN PLACE AND 2 HOURS LATER IT WAS BACK VERY SERVERILY. I WENT TO EM. ROOM THEY SENT ME HOME OF COUSE BACH ACHE? THEN LATER EVERY THING I TASTED IN FOOD TASTED LIKE METAL!!!!! THEN MY FET AND HANDS STARTED GETTING NUMB.WWENT BACK TO EM, SAID CARPAL TUNNEL, SENT ME HOME AGAIN.WORKED UP UNTIL JULY18,2007. I COULD NOT MOVED FROM BY BED. ITS WAS 7 AM. IN THE MORNING. I CALLED MY BOYFRIEND. AND WHEN HE CAME ,HE IMMEDIATELY CALLED EMERGENCY SQUAD. THEY THOUGHT I HAD A STROKE. ENTERING THE HOSPITAL, I HAD BLOOD WORK AND A CAT SCAN DONE, AND NO STROKE SHOWED UP. THEN THEY DID A EMG. AND SAID I I HAD GILLIAN BARRE. WE HAD NEVER HEARD OF IT. IT WAS THE WORST THING I HAVE EVER EXPERIENCED IN MY LIFE. I WAS IN THE HOSPITAL. THEN REHAB,AND THEN A NURSING HOME ALL FROM JULY18, TILL AUGUST 30 2007. THEN CAME HOME WITH A WALKER AND A WHEEL CHAIR. BATH BENCH.AND LOTS OF PHYSCIAL THERAPY TILL OCTOBER 16,2007. I AM A MIRACLE. THANKS TO GOD AND MY BOYFRIEND CAM, THAT NEVER MISSED ONE DAY, OF COMING TO SEE ME???? VERY RARE HUH. IM STILL NUMB IN MY FEET HANDS AND MY RIGHT SIDE OF MY FACE IS VERY DROPPY. I WOULD LOVE TO TALK TO SOMEONE WHO HAS HAD THIS GBS. PLEASE EMAIL ME AT _[removed]_ . THANKS FOR LISTENING.

Hi All,
My name is Ricky and i'm from Trinidad which is in the caribbean. I got GBS when i was 15 years of age. I woke up one Sunday morning and was just liming with my cousins who was spending the weekend with us. I statrted realizing that something was wrong when i started falling down all of a sudden. I tought that maybe it was some sort of muscle issue and when by a normal doctor. This doctor gave me some muscle relaxers and some vitamin boosters and advise that everything would be alright. To my suprise the next day i could not get of the bed and found it difficult to make a firm fist. My Aunt was one of the persons who took action and rushed me to specialist Dr. Esack who schoked the living day lights out of me lol, with some machine for testing.
I am 23 years of age at this time so i'm not clear on some of the medical terms and devices used on me, but they took samples upon samples to test to find out what was the cause for it. That was unsucessful and up to today i have no real answers. This virus changed my whole life around. It made me aware of eveything around me and i was a very sheltered child growing up, never wanted to take a risk at anything but today that has changed. Within 4 days of having this virus i was completely paralized and could not operate and function. It took close to TT 30,000 at the time for 10 bottles of Immunoglobulin which i recall was mixed and administered as 5 doses for 5 days.
I came into the nursing home weighing 160 (fat kid) and left about 120, i couldn't eat anything. I started walking within 5-6 months. The doctor advised that he found that i was recovering pretty fast becuase of my age and being young. There were times when half of my face was paralized and everytime i smile it would scare ppl lol, no lie, thank God for my family and that doctor Dr. Esack. I have joined a gym since and am in great shape. I tought i would never be normal again and enjoy the joys in life, but their is hope and god. i Prayed and prayed for a miracle and at time got angry at god for chosing me for this virus. I will pray for you all that are still recoving and hope for the best for you all. At this time i can run, jump, dance move all parts of my body and i thank the lord for that.
But now i have a problem that i'm planning to visit the doctor as soon as i get chance. Right now my hand and body trimbles and it becomes uncontrollable when i don't eat on time. This is affecting my work and then my work is very demanding and takes alot out of me, more mentally than physically. I happy to know that i'm not alone in this battle and sad to know we all have to go through this life with the experience and memories of GBS. If anyone knows of any vitamins or treatment that can assit my body trimbling, please don't hesitate to help a brother out. It would be gratly appriciated.

All the best to you all and wish you all a full recovery. Please don't give up. I know it hard, but one day it will be better and try not to bring down the ones who love you the most that is around you and helping you, becuse i know that if gets fustrating and sometimes ppl vent theri fustrations. Good Night all and take care

My son had this in 1999. It did not take as long to diagnose, but his symptoms were a little different. He started out having sore legs until he could not walk, when that happened, I took him to the hospital, after a few doctor visits of not knowing what was going on. Luckily he did not have respitory distress. He was only 6. He was in the hospital for 3 months, but he is a perfectly healthy 14 year old today. Good luck with your continued recovery.

My 54 year old cousin has Gillian Bare syndrome and is parlyzed from the neck down although able to breath so far. It came on suddenly over a 48 hour period a few days afterhe seemed to get over a mild case of walking pnuemonia. They have down the blood treatments at least twice and they have centrifuged impurities out of his blood. After only one week and no changes they want to put him in rehab. I think this is too soon, that they should possibly remove him from ICU (risk of resperitory failure is over) but continue treatments. I have read of relapse when the patient was sent home too early or put in rehab too early.

I have Dr.'s I trust and I am going to ask them. Most Dr.'s I do not trust because I have seen so many patients die because of mistreatment and failure to note simple things like dehydration. I have actually seen a baby die during a circumcision.

What is you opinion on putting a patient in rehab who has yet to show any reaction in the limbs???

To all that have shared your experiences with GBS. Thank you. My Father In Law was hospitalized 11/19; complications of a bladder infection. His kidneys were failing. Four days in ICU, kidneys better, and moved to regular room. We thought we would be coming home in a day or two. By the end of the day, his legs, feet, hands and arms began tingling and swelling. By the next morning he could not move his legs and his right arm. By that evening he could not move his left arm. He also was suffering hallucinations, double vision and slurred speech. He lost the ability to control his bladder and bowels. He had a Team of 7 specialists working on his case (Where's Dr. House when you need him) and the only tentative diagnosis they could come up with was polyneropathy. I began researching it and came across GBS. The day they took him for the spinal tap and lombard punch the nurse told me they had ruled out GBS. On Tuesday of this week they did a nerve biopsy and sent it to the Mayo Clinic. Yesterday (Thursday) they diagnosed him with GBS. We've seen some improvement over the past few days. He can move his fingers on both hands, and his left arm can move. The Hospital wants to discharge him to rehab on Monday. They said unless he can feed himself and set up on his own, he cannot stay at the hospital rehab but must go into a rehab facility. From reading some experiences I am worried it is too soon. Another similiarity I picked up on, many had symptons before the onset. I know that my father in law, had fallen and broken his knee cap, was tired, in a lot of pain (we thought from the bladder infection) lost his appetite and lost about 45 lbs in 10 weeks and another 11 lbs since his hospitalization. He is 62 yrs old, and we are worried about his recovery. I know he needs a place with Physical and Occupational Therapy, do you suggest anything else to help with his recovery? Something the doctors overlook but as survivors you know the need for it? I did not read that depression was a big part of it, but saw many references. I do know with the unfortunate symptons it would be inevitable but after full recovery? Is it something we should meet head on with now? Does anyone that had GBS drink or smoke? He does and I would like to know if this affects anyone? Any advice is very much appreciated!

there is new technology that has come about. Old conventional medication only helps for pain etc. Doctors forget about wellness. And the only way it is to be treated is to look at our immune. By fixing our immune system we fix all existing diseases and illnesses. Go and look at this website and read about the sugars our bodies are missing. I dont mean sugar that you put into your tea and coffee. Sugars from food etc.
the web address is http://www.mannapages.com/estelle . Go and read up on this and listen to the testimonials. It is a fantastic product. It has worked for me and my family with many different illnesses. Take care all of you and God Bless

I havent thought about this much over the past 10 years or so... so some of the details may be incorrect but here goes:

Years ago, my best friend started to feel very sick. He wasnt sure what was wrong so for 5 days or so all he did was lay in bed. He eventually felt so strange that went to the emergency room. (I remember talking to him and he had trouble even describing what was wrong)... The doctors were puzzled. They started a barrage of tests and eventually discovered that he had Leukemia. They began treatment and over the next few weeks and months the GBS symptoms exploded taking over his body. It started with his face. He could not make expressions. He'd even sometimes just hold his mouth in the shape of a smile. It lead to kidney failure among various other problems. After months of cancer treatments he was almost totally paralyzed. Barely even acknowledging that he could hear. Somewhere right around then was when they diagnosed him with GBS. He was so weak that they had to stop the cancer treatment because it was killing him. He never recovered and eventually passed away... I know this is a terrible story, but it's good to see that there is at least a little more knowledge of GBS around. It's also great to hear so many survival stories.