Guillen Barre Syndrome???

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 www.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

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