curing guillian-barre syndrome

I developed GBS in 1999. I collapsed at work when my lower body felt like a blow-torch attacked. My blood pressure was 170/210. I could barely shuffle to the phone because my legs were numb. No one that I worked with took the time to help me to the phone. I don't think that they understood how how debilitated I was at that moment; one minute I'm doing my work and in two seconds I can't even walk to the chair to sit down. Two weeks of hospitalization and I had 2 doctors with conflicting diagnoses. Ortho guy said my TSH level was so out of whack - he put me on synthroid, thinking that would be the answer. The neurologist did the spinal tap and found protein in my spinal fluid. So which is it?

I have to go by how I feel physically. I'm tired all of the time, I hurt and ache, I fall at least a couple times a month. I wish my strength would come back, and I believe (though no doctor has ever said it) that it has also messed up my organizational and fine motor skills. Doing piles of paperwork at a desk is an impossibility at this point. I have found myself taking cashier or cleaning jobs because there is not much brainwork required. My writing has changed, and numbness is prevalent in all of my limbs. It is tough to get people to always help me do the heavy duty things that I used to do myself. There is more to this syndrome than the physical problems that DO NOT GO AWAY for all of us. I find myself very depressed because I now need to depend on other people to help me do some everyday things that most people do automatically without thinking about it. Physical therapy has helped me to improve to a point, but I think that I have reached a plateau in recovery. This is as good as it is going to get.

I need to find a doctor who is well versed in Guilliam Beret syndrome. I am 48 and I need a doctor who will be able to help me with the pain and maybe help me to get over being depressed about it (my depression is really bad because I can't do for myself). I need guidance and advice from a professional that specializes in this area.

My family does not believe that I could still have issues with an illness that occurred 9 years ago. I pray that they will never have to face this illness.

Andy Griffith (from the series Matlock) also has GBS. I understand that he suffers from a lot of pain, and send him my best regards to a full recovery, which some GBS patients can attain.

I live in Cleveland, Ohio and if anyone has information on a physician who has experience with GBS and knows how to help GBS patients, I would appreciate it.

2-11-08 numbnrss from feet traveled up to neck, paralized within 6 hours for a period of 4 months, , then rehab for 6 month, still in wheelchair, and use braces to walk for 30 min at a time. 11 months later still in the thick of it. lots of pain in the knees and hands, but continue to workout, and walk every chance i get, its amazing to me how gbs changed my life, and have seen a side of rehab hospitals, handicap, lots of people in pain for various reasons, the world looks alot different in a chair, most people i come across are very helpful, my employer has been very supportive, and my family has been there at every turn. this has been a rough road but one i've learned alot from, and has taught me alot of patience. have no idea how long it will take before i am fully recovered. stay positive, strong, and never never give up.

I also have GBS and raynaud syndrome. they came on at the exact same time. Last year, but because I have had new symptoms and a re-occurance this year I am wondering if I have CIDP. iF YOU have any info please write back good luck.


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This is so scarey and I am so sorry for all of you that have this syndrome its heartbreaking to read what you all have been through! I have a adorable 4 yr.old grandson that has had a fever off and since last week he has said off and on also that his left leg hurts to where he cant stand or walk on it and also sometimes his left arm hurts and cries because of the pain. when he has the pain thats when he has the fever. he also has had loss of appetite and hasnt drank many fluids either. The other morning he woke up and he said his leg and arm were hurting and he couldnt move them at all he couldnt even turn over in bed or anything. I took him to the ER and they did bloodwork (which wont get back for 48 hrs.) also x rays,ultrasound of hip ,and strep swab and all came back normal. he did have a swollen tonsil with puss on it but no strep - by the time we left he was able to walk a little better on his leg and the whole time at the ER he could move it just not stand or walk on it to well- this morning he was still favoring his leg a little - does this sound like anything any of you have gone through? he has had a flu shot (a few months ago) and immunizations as required.

My niece has GBS and we were told it could only be found by spinal tap or from brain fluid tests.  We live in Oklahoma City and I think we have one of the best doctors for this disease at OU Medical Center.

It took me 18 months after treatment. To fully recover from GBS. If the treatment didn't work......Im sorry.

also how long did u guys suffer severe symptoms like paralysis and blurry vision ...like how long after your first symptoms ? because ive been having a numb right leg for months but no pain and sometimes i walk a little "off" but other days im fine did this happen to yall ?

Hi,

  i had acute infectious polyneuritis in april 2009. that time i was 24 yrs. The paralysis starts from my legs and with in 2-3 days it ascends to my hands. I took medicines and done physiotherapy for 2-3 months. it was cured in 2 months. it was told that this problem will not occur again and i will be 100% recover, though i was recovered completly but still sometimes whenever i take any anibiotic medicines i feel pain in my lower legs. after discontinuing the antibiotic and proper care it again gets cured. these days i got severe allergy from pollen grains so my doctors advised me to take antibiotics, but after only one dose of antibiotic i feel pain in my legs and i got frightened about the previous disease. If anyone has any suggestions for this please repply.

I was diagnosed with GBS sep of 2011, I was on a respirator for 2 months and in the hospital for an other 10 months, I still can't walk or use my hands very well.
I don't know how long it will take to fully recover if ever but I do know it will take a very very long time even up to 3 years, as your nerves re grow at a rate of 1 millimeter per month.

Hi Jeralee, I recovered from Gillian Barre when I was 12 yrs. old. I do not remember what the doctor gave me , but I started to recover within 3 mo's. I started out with weight training and when it was warm enough i bicycled endlessly till i recovered. I am now 65 yrs. old and it is coming back to haufgt me. I found a new product on line called Kalawalla. Check it out.

I also have GBS and was sent to OU medical they were the best. They done nerve conduction test and spinal fluid before knowing what I had. I had to have help walking bathing going to bathroom and wiping I was given IGIV treatments for 5 days. They caught my symptoms before they got worse. I have to walk with walker and I get tired easily. I want my old up beat life back but I am just blessed to be alive.

How long hasit taken to diagnose these people with guillain barré please? My husband is 3 months down the line, with 2 ospitalisatilns, and only had a lumbar puncture 2 weeks ago, and has an emg tomorrow. This has played havoc with him and anxiet, and whilst he hasn't nearly been as bad as some people, has been very unwell, and is making him very tired and emotional now

Sorry about spelling....bloomin IPADS!

are you able to pull your feet up???/// contact me plzzz..my email id

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Hi My name is Bhuvanesh and I am from India. I also suffered from GBS on 19th Feb, 2009. I was on Ventilator for more than 120 days and my whole body collapsed. I was given immunoglobin injections and took almost 2 years to stand on my legs with the help of walker and then stick. I was 22 year old at that time and was in final year of Chemical Engineering. I gave my final year exams from Hospital and now after 4 years or so I have recovered to an extent that I can walk properly but I still have foot drop. I still go for physiotherapy treatment. Hope this worse experience of mine will help and will boost up your moral and give mental strength to you.