I noticed that you posted in dec. But just in case.....I myself had gbs..It is a nightmare.....A very scary one....I hope your sister got better as most gbs sufferers do...You can find info and recieve packets on information in the mail at the guillian barre syndrome foundation site--just go to Gbsfi.Com ----they have a forum too..Which I found and still find to be helpful because I still suffer from residuals(tingling,buring,pain in my arms and legs)--they also have information an support groups for gbs sufferers that meet around the world..Basically the odds of finding a support group near where you live is very good...Hope I helped you some---if you have anything else you need I will be happy to help..Hope your sister is doing well----jade

Thanks so much for the reply jade...We are now going into the six month of this nightmare. She is doing better the last four days. She was in the hospital and came home thurs her birthday. Since she has improved this is the most improvement we have seen yet. We are about 40 miles from the new orleans area (northshore) and had her in ocshner hosp I am so glad we brought her there. The main problem she has is with low low blood pressure most of the severe pain seems to have went away. She now has an ulcer in her stomach and for two months could not hold any food are water down. The meds are helping her now. Did you have any problems with your blood pressure?? And how are you doing?? Hope you are well. This has been so so hard on all of us and of course worst for her. It is heartbreaking to watch your loved one go through something like this. Or should I say to see anyone go through this is. When she is well enough I will have her join the online forums. I found them very helpful through this and I know she would like to hear form someone who has been there and done it...

Take care

dawn

Hello dawn,
I am glad to hear that she is finally home and starting to do a little bit better. What did they say about her blood pressure?? I never had a problem with my blood pressure when I had gbs..I bet she was glad to finally come home...And for her b-day too...Thats great...Do they have her on any meds?? Do you plan on checking out a support group for gbs?? She would probably love to talk to people who can relate..I know I did... I'm doing much better now.. I had it in 2004...I do still have residuals(after effects). Like right before i'm about to come down with the flu or a cold my hands and legs will start burning and tingling.. It's so strange. I still talk about my gbs experience, and I bet she will too.. Well tell her I wish her a happy b-day and hope she feels a bit better every single day....Take care dawn-----jade

my uncle (30 somthing) had guillen barre he was at a point were he couldn't swallow. It took him about a year to get better but now he is back to his full on construction company job but still has the burning feet.

hi about 5 weeks ago I just woke up one morning with tingling in my feet and lower legs. My dr was quick to say it was nerve damage from my diabetes but everything that I have read says other wise. Now after 5 weeks the tingling has gone away but I feel numb from the toes to just below my breast. I also have a tight sensation as if I had a pair of jeans on that were 4 sizes too small. Just last week I had an emg done but it came back ok meaning no nerve damage and tomarrow a mri will be done to check for spinal stenosis. I am starting to get depressed from all of this and my family is no help. I am truely scared. Could this be gbs and if so what test do I need to talk to my doctor about? Please help

Hello everyone,
I have a question about about how long does it take for gbs to go away? My family is really scared becausew the doctors think my mother has gbs but there a still not sure she can't walk or has any feeling from her chest down. If you can post back to inform me about how long it takes thank you very much

Hi to everybody. At the tender age of 25 I awoke one day with pain in my legs, it was a Thursday. By Sunday I was staggering and my head was drooping. By Tuesday I had seen 4 doctors who all told me I had the flu. My left eye would not close when I blinked. Finally on Tuesday evening an abulance arrived and I was taken to EMS where I was given a spinal tap and diagnosed with Bells Palsy on the lest side of my face and GBS. I was treated with steroids and pain killers and to tell you the truth this has been the worst illness of my life. I am now 50 but have researched this illnes sas I was told It may recur. I now beleive the cause to be mercury poisoning from my fillings at the age of 18 I am now having them removed and will then undergo chelation therapy to remove the mercury from my body. Do the research. A number of people had GBS 2 weeks after flu injections which where mercury based Many autistic children get better after chelation therapy as immunizations contain mercury. It is my opinion that the cause of GBS is mercury poisoning

GBS - Female
Date started: 24 Sept 2006
Date diagnosed: 26 Sept 2006
Live in: Alabama
Cause: unknown
__________________

It began with having double vision problems and I began dropping a few things but dismissed it for clumsiness. On the 24th Sept 2006 my fingers and up my right arm went numb. Worried I might be having a stroke we went to the ER. They released me with Rx for hypertention and pain pills. Went home and I had problem when getting out of the truck, I took a few steps and fell. My fiance helped me up and I tried again but couldn't make it up the three steps. He couldn't lift me up so he got a blanket and had to drag me inside and somehow he got me up on the bed. After resting for awhile I was able to go to the bathroom by myself but later had some difficulty walking but was able to look up on my computer my symptoms but with so many things it could be I tried to get some rest. I had to sleep sitting up as my breathing was labored. The next morning 25 Sep 2006 came early and I had problem with severe constipation. I had tried to eat but nothing would stay down. After trying all remedies, I knew I would have to go back to the ER. Later that evening my fiance called a cousin to come over to help and they carried me and put me into the truck and off back to the ER we went. At this point I was losing feeling in my back, legs,arms. Admitted to the hospital abt 2 a.m. and was diagnosed with GBS about 9 a.m. on the 26 Sep 2006 and was intubated about 1 p.m. On about 27 Sep 2006 I was given IVIG with another round of IVIG abt. 5 weeks later. I was given a trac and belly feeding tube. I dealt with phantom leg, ice picks and frozen metal wrapping around my affected limbs for months. There also was horrible nightmares that I swore was reality. I had to spend about eight weeks in MICU then about two weeks in a hospital room then was sent to one of two nursing homes I have been in over 13 months. I had to spend a week in another hospital when I had a blood clot on my right lung two months into GBS. I finally got home 20 Dec 2007. If it wasn't for PT at the last nursing home (they was wonderful). I wouldn't be doing as well but I am in a wheelchair and can use my walker (I am walking up to 140 feet now) I have numbness and vibrations in hands and feet and have drop foot in both feet. My right eye has been giving me problems with the muscles around it and a little bluring. My right side of my mouth doesn't smile as much as other side too. The doctors (I had quite a few) say that I had a severe case of GBS and that my rehab is fair. I get depressed but thank God I have the ability to look at things from two sides. I try to remind myself now of how it was little steps by little steps that got me to this spot and I am truly grateful. Little things we don't think about any other time now means a great deal like being able to pick up a fork or blow your own nose or scratch an itch. Sure you need help on the big things like walking or sitting but never did I dream I would need
help to roll over in bed, take my hand out from under the sheet (sheet was too heavy) or need help closing my eye lid. Having someone listen to me and be happy for each tiny movement, made each day hopefull.


They say that two people in 100,000 get GBS ..... well in MICU there was another lady that came in with GBS while I was there. We have since met long after our guys had already met in the waiting room. In talking together we (the four of us) have found alot of
similarities in our GBS. The guys, our caregivers, have had their rough time of this also and it has taken a toll out on them with worry. I don't know what I ever would of done with out him. Patience and rest and not getting overly tired sounds easy but it helps.


What my problem is now is to find a doctor that takes Medicaid AND does PAIN MANAGEMENT. I had never heard of Pain management before my GBS. Who or how do I find a doctor that takes Medicaid and does pain management that isn't a 100 miles away ??? I was told today the doctor I could get doesn't do pain management and refers out to a place in Florida about 100 miles away. How that can work I don't know as that requires two states. I am taking loratab for pain and I guess I am in the 40% that are NOT drug pushers, dealers etc. If I could go without pain pills I would as I never did like taking any meds. but with this constant pain there is no way I could stand it without something.

Any help at this point will be appreciated.

"Share a Smile"
CKLee in Alabama

Adult GBS
Sept 2006
IVig
Alabama

Hey there everyone,

Well, I went to the new Doctor the other day. Spent more time filling out paperwork than time with the doctor. Thank you for telling me to take GBS information, as I did go prepared with all kinds of paperwork from information on GBS to family health history, however, it wasn't even looked at this time because.. 1) the nurse was informed about GBS as her uncle had GBS seven years ago. First thing the nurse asked was "What STAGE are you at" ? I guess I was so surprised that I didn't know what to answer. After drawing blood the nurse took me in the room to see the doctor. He came in sat down and began asking me just a few questions just as the nurse came to get him as a woman had pastout in the hall. The doctor excused himself and went to see the woman and she was sent to the hospital. So the doctor ended our very short visit so he could attend to the woman and with handing me Rx scripts and telling me to see him in a month. In the short time that we did talk we desided on cutting down my coumadin to 1mg and prob. will be off that the next visit. I sure hope so. Coumadin is a blood thinner that I have been taking since I had a blood clot in my lung back in 2006, just 3 months into GBS and I don't like taking any more drugs than needed. 2) I didn't get to ask the doctor if he was informed about GBS, but even in the short time we did talk I had a better feeling that he was realy listening alot better than my last doctor. I did leave a copy of GBS information for him.

Question 1): My hands show atrophy and are strange looking as the fingers slant and curve and I am unable to do little things like zippers, buttons, and on up to things such as turning pages in a book and opening bottles, let alone using can openers or even pluging in the electrical cord. Does anyone else have these problems ? does everyone have atrophy in there hands after GBS ?

Question 2): After reading some copies of paperwork from the hospital of information on what was done while I was "out" says that I have an enlarged heart. My question is does the heart enlarge with GBS or do you think it is just my own personal case ?

"Share a Smile"
CKLee

I also have been diagnosed with gbs rather the chronic form i have the numbness sandpaper feeling in my hands and feet. trouble holding some things or opening things. although i was wondering if anyone else had trouble with shaking. my hands sometimes shake horribly i have trouble with writing and eating sometimes. my heart goes out to all of you that have or are going through this horrible disease i look forward to hearing your feedback

Here it is almost three years since my first experience with GBS...WOW ! Yes I still have numbness in my feet and hands. I began having some shaking of my hands but thought it was just some "old age" effects coming on... I'm only 59 now but feel like a old woman. The shaking happens mostly when I am real tired or lifting more than my normal "GBS" ability. I say it that way to show the difference between my normal before GBS and after. I was very healthy prior to GBS and did anything I wanted to do including my favorite crafts. Now I am lucky to try my painting again.. I am getting stronger every day and able to "adapt" to alot more things. I say adapt as I am not able to do those thing the same as I had done prior. Most things I have to improvise something to help to do even the "simple" things. Such as having to take out my credit card from my purse, simple right ? Not ! so someone told me to put a small hole in the corner, put a ribbon thru it and make a loop to finger it out. It works ! (had to have help to do it but now I can get the cards out myself)

The new Doctor I mentioned before turns out to be wonderful. He had worked with hundreds of cases of GBS over the course of his medical career. I was seeing him once per month but now it's every other month only because I had the home visiting nurse here each month. But now she is not coming out because of cutbacks, so I might have to start back going to the doctor each month again. The doctor makes me feel much better knowing that he understands what I am talking about. I had went in this last time telling him about a numbness on my left side of my face. (My mom had Bells Palsy so I asked my doctor) He said it "could" be Bells Palsy but just to be sure it wasn't the beginning of a recurrence of GBS he gave me some meds and we are watching.

AS far as blood pressure.. I was put on BP meds the first day I went to the ER and still take them. While in MICU my BP would go up and down. Scary ! Way high then way low. Now it has finally "normalized" on the meds.

My problems now are very swollen, numb feet. More so in hot weather. Still have foot drop in both feet. Both hands have atrophy, the right has "drifting" fingers. (fingers lean to one side)
Finally able to lift a quart of liquid with both hands ! Yea !! Walking is difficult even with the walker because of the swelling feet so I am in my wheel chair most of the time. My eye is still having problems with the musles around it. Feel a tightness around right eye especially when eating. Depression sets in most days but I try to work past it with being on FB (online). But trying to type like I am now takes forever and I use to type about 60 wpm (not fast but good) and now I have been typing this for about one hour..or two.. oh well.

We are All going thru this whether victim or caregiver and there is only one thing I know that helps. Talking about it with anyone that will listen. Even if that someone is a stranger or this board ... they won't be a stranger after you talk about GBS to them. Most thank me for telling them cause they never heard of it before.

PS about that "mercury poisoning" I truly doubt that, as I for one did NOT have flu shots since a small child and my teeth was out 15 years prior to GBS. I was stressed and overly tired and had eaten poultry just prior to coming down with GBS as they are thinking might be some of the triggers. My friend with GBS had a flu shot prior. (ps..she is up and doing very well. no walker..just careful and dealing with depression from not being able to go back to work..forced retirement)

Question : Little finger unable to close -- it's always standing up. Dr. says that is normal for GBS people. ??? Also memory.. losing it more.. from GBS residuals or is it just "old age" ???

Thanks for letting me "share". I'll try to get back on here again soon... Good luck to ALL, my prayers are with you.


"Share A Smile" even if it's only a half a one.
CKLee

I've have been reading through these posts looking for all the information I can gather.
My brother is 33 yrs old and was diagnosed last 6/18/09 with GBS and it seems that with every day symptoms worsen. From what I've read this is a very long never ending disease/syndrome. It definately puts life on hold.
My brother's GBS seems to have been triggered by a doctor who felt he needed a Tetnis shot and gave him the childrens DPT shot instead.
If there is anyone in the Sacramento, CA area with help or support, it would be greatly appreciated.
A worried sister

Although I have not been diagnosed with GBS, I am presently awaiting an appointment with another specialist and shall most certainly mention GBS as a possibility. Feb 2008 I had serious lower back surgery and, three weeks later, a serious infection. For the infection, I was given IV antibiotics 24/7for 10 weeks and then two huge pills daily for 12 weeks. Three weeks after that my legs started to swell horribly, and this swelling proceded up to my waist at least. With this came pain (I had names for the varieties like "lightening", "flashers", "needles" etc. Doctors couldn't seem to determine which had caused what and I spent about half of 2008 in and out of hospitals, and/or medical rehabilitation wards. Now, for the last 16 months I have had physical therapy 5 days a week, some in the gym and some in the pool. I can walk a ways in a walker, but not far and if I want to get anything done, I need a wheelchair. I suspect, when I read the GBS symptoms, that I am one of your group because I have 90% of all the symptoms I see listed. Just in the last 5 months, I have developed a whole new set of symptoms. Vision problems, shakiness, headaches, and dizziness. The symptom that scares me the most is depression, although none of my friends would believe it as I am able to take my pain killers and put on a happy face, and sleeping pills prevent me from becoming sleep deprived. Thanks for listening. My husband (caregiver) has the patience of Job, but he has had to listen to is for so long, maybe this will cut him a break