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My son was diagnosed with Guillain Barre Syndrome and he has Guillain Barre Syndrome now for a month. Plasmapheresis treatment did not work on him and now we are waiting for another treatment. How long process of curing Guillain Barre Syndrome takes?

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I think that someone must mention to you that there is no cure for Guillain Barre Syndrome. Several treatment options are available, Plasmapheresis that you already tried with and high-dose immunoglobulin therapy (intravenous protein injections). Treatment of Guillain Barre Syndrome mainly consists of watching for fluctuations in a patient's body functions while the nervous system recovers from the damage done by the immune system. Part of this are heart monitors and respirators to assist bodily functions, also manual movement of limbs to maintain flexibility and muscle strength can help the patient to recover their ranges and speed of motion quickly.
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My maiden name is Tracy Stanley and I'am a G.B.S. survivor. I was 8 yrs. old in 1972 when I developed the disease. At that time it was commonly known as "French Polio". I was paralized from the neck down, had double vision and on a ventilator. I had a 20% chance of survival. There was 2 other children in the U.S. fighting the disease the same time I was and our Doctor's were in constant contact with each other.

I was always told I had a 100% recovery, however I have always delt with my legs giving out on me from time to time. As if someone came up behind me at the knee. Plus, I was never one to complain about the occassional numbness in my legs and hands, such a small price to pay for nearly loosing my life.

My question is has there been any studies done on people who have suffered from this disease 30 years earlier?
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Hi,
I also had GBS at age 8 in the mid 70's. I was paralyzed from the waist down and on a vent for a short time. At 25, I was told I had lupus, and then retested and told I did not. Now, at 35, I am heading back to the rheumatologist for analysis for a connective tissue disease. I have extreme fatigue, joint inflammation and Raynaud's syndrome. I have wondered for years if GBS has an impact on this. If anyone has info, I would appreciate it.
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I was diagnosed with GBS in Aug. 2005, plasmapherisis worked for me but i am still not well. I feel like a bundle of nerves most of the time and muscle aches. I would love to hear more about your son.
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I suffered with Guillain-Barré in January 1972 in Ontario Canada. I never met any other patients at that time or even now. There were two or three other people with this syndrome in the Toronto area and my doctor tried to link us together without success.

I was lucky in as much as I never needed a respirator but did loose all voluntary muscle control and was in hospital for 3 months. The only treatment given me was coridisone injections and pills . I went home with a Red Cross Homemaker since I was not strong enough to look after myself or my 5 year old son. My husband helped when he was home and not working shifts. It took at least a year after that before I felt somewhat better.

I still have some muscle weakness and it shows up in my speech if I am very tired.

Just wondering about other Canadian patients in the 70's who had this disease.
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I am probably adding this a little late, but for those of you who have spoken about research done regarding post GBS, you may find this article very interesting. It helped me out tremendously, there are a few others out there, but this one really covers all of them.

I had gbs at the end of 1985 into 86, fully paralyzed, trach for 6 weeks, eyelids taped shut. Was told that I would recover 100% and for many years ignored my lack of stamina, fatigue and slight pain. However a few years ago things started becoming worse and some days I can barely get out of bed, real fatigue hurts, and is so debilitating. My hand and foot pain is becoming worse too. I am on 2 lots of medication that has made my life easier, thank goodness - however I find it difficult to take since I have never been someone to even want to take a pill for a headach.

Here is the URL jsmarcussen.com/gbs/print/residual3.htm
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How are you, I came down with GBS in 1991 about 2mos after i came home from the Desert storm. I was almost complete, i didn't have to be on a breathing machine, but i could not move anything my body but my head. I was in the intensive care unit for almost a month to be monitored, because the first 2 to 3 weeks is crucial. After the third week i started plasmapheresis treatment, 5 to be exact. I didn't any changes right away, but it took about another full month and the start of physical therapy before i could shrug my shoulders and move one of my thumbs. By november i was able to start using the wheelchair on my own. And it took me another 9mos of physical & occupational therapy before i could start walking again, by using a walker to a cane, now i'm able to do it without of that, but i do still have some weakness in my ankes or dorsey flexion, but i am using strength training to make it better. I'm able to do alot of things now like bowling and golfing which require alot of balance skills so it's getting better for me. Your son is very lucky, because he is young and can recover and live a good life, i was 22 when it happen to me. IF you have any questions while your son is recovering please ask.
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My friend was diagnosed with GBS and she's getting worse! She was paralyzed from the waist down and hospitalized for 2 months during the summer of 2007 now her hands are paralyzed and she can't do anything for herself. You all seem to have recovered, she's been hospitalized for 4 months.
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I was diagnosed with GBS at age 23 2 days before Christmas in 2006. I was in the ICU for 5 weeks and was in a rehab hospital for another 4 months. I was on the ventillator for 3 months and was hooked up to a feeding tube for 4. At my worst, I was fully paralyzed and only able to blink my eyes, although they were extremely blurry and I could barely see out of them. In the beginning of it all, I received 3 treatments of immuniglobin, but it did not work for me. When I got out of the hospital, I was using a walker and within 3 months or so, I was walking on my own. It has been a little over a year now since I was diagnosed. I still have a little bit of "foot drop" and my feet are still very stiff and numb, especially in the morning. But, they say that your feet are the last to come back and little by little, the numbness is going away. I played college soccer and was a marathon runner, so still not being able to do those things is very frustrating to me. But, in time and with patience, I know that I will be able to do those things again. I just wanted to give those of you hope because I am getting stronger every day and by the two year mark, I am hoping to be back to 100%. With GBS, I really feel that with mental strength, determination, and good therapy, getting back to 100% is definitely feasible. It has been the worst year of my life, but the little improvements every day keep me going. I am just baffled that doctors make it seem so rare, but more and more people are getting diagnosed with it. I didn't even have a respiratory infection prior to being diagnosed, so I don't know what caused it? Was this the case for anyone too?
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GUEST:
I found your post very uplifting. My dad is living this nightmare that is called GBS. He was admitted to the hospital 2/9/08, in the ICU 2/10, put on the vent 2/14, ET tube changed to a trach 2/21 (as well as a feeding tube placed). It has been an emotional roller coaster. He's completely paralyzed except for his head. And he's having issues w/ his eyes not closing, therefore becoming dry, irritated and infected. Like you, he has no idea what triggered this-- he didn't have the flu or other virus, no food poisoning, no immunizations, etc etc
I am trying to hard to get in touch w/ people who have suffered this horrible, horrible disorder.

Thanks so much,
Stacey


**edited by moderator**
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Sorry about your dad having this disease.I have had it over a year.Im lucky with parallysis in my feet numbness with excruciating pain.Weakness throughout my whole body.I got mine they say from getting a flu shot.It can take months to manifest itself.Another guess they have for people is asking if they ate chicken.If so it can be undercooked and cause this.But just a guess.I had a terrible flu ever with bone aches like nothing ever before and extreme back pain feet felt like in bucket of ice I believe prayers from others stopped its upward progress.The pain is always there remember to help those with this.No strength to cook or clean very weak. God Bless you all
tina godskidalways at yahoo dot com
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i got gbs. in feb. 1996, was in hospitals for 4 months, then i checked myself out, got alot better once home with my kids. i was paralysed form neck, down, on ventilator, lungs collapsed, heart stopped, in icu for 6 weeks, even got physically abused by 2 seperate nurses! can answer many questions if you like!
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My mother was diagnosed with GBS in January 1977, when I was only 2 months old. She remained in ICU for 3 months with a tracheostomy and on a ventilator. The paralysis never went below her waist. The cause has always been a mistery. With her strong desire to live and raise 3 young children, she fought through physical therapy and regained all of her strength without any weakness. Hopefully this will encourage you all.
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i am in the same boat as you....no prior illness or vaccines.....kind of scary not knowing the reason for gbs.
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