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does any one have Guillain Barre Syndrome
I have Guillain Barre Syndrome, I was diagnosed in April 2008. Its a rare disease, affecting only 1-2 people in 100,000. I would like to hear from any one who has or has had this or who has a family memeber who has had it I don't know any one who has this disease, I had never even heard of it untill I got it! Thanks....
In 2000, I was dianosed with GBS. I was told that my case was mild. I just would like to know, do symptoms ever go away? and do they come back? I feel like the tingling is more than it has been and sometimes I feel a numbness in my anal area. This is all like before.
There are many symptoms of gullian barre, but mostly numbness and weakness in your extremities. Within two weeks of the first symptom is when it gets really bad. DON'T WAIT! If you can't get to a nuerologist right away go to the hospital. The sooner the better for long term recovery.
I am glad to hear you are doing well so quickly. You must not be in ICU as you are able to use a computer. That tells me that they may have caught it. early enough. I wish you the best and hope for a speedy recovery.
What are the symptoms of this? How long do you usually have it before it gets really bad??
I have GUILLAIN-BARRE (GBS) I am still in the hospital,
But I guess I should start at the beginning. On 1-22-09
I woke up with tingling in the tips of 4 fingers on my right hand and the tip of my tongue. I really didn’t think too much about it as I was going to see my pulmonary DR the next morning. 1-23-09 I went to the DR and he just said that I probably slept on it wrong and that the feeling would come back and to follow up with my regular DR for my high blood pressure. That night I lost my sense of taste and the feeling my lips. 1-25-09 I was grocery shopping and had to leave early because my legs were so tired I could hardly stand. 1-26-09 my calves are sore it feels like I climbed the Rockies in one day, and my feet are now numb. I call the doctor to follow up and mention I need the doc to check into this numbness the nurse didn’t seem concerned, follow up for 1-29-09. 1-27-09 I begin to feel the numbness in both of my legs, not bad but I just seemed clumsy, I began to get scared. 1-28-09 it was very difficult to walk without using the walls and furniture for stability.
Now I am really scared …. I’ll find out tomorrow!
D-DAY 1-29-09 The DR did some simple tests and said he would be right back…..he came back in and said that I had to go to neurology???? Didn’t Say why just go now!
So I go to neurology and they do some tests and an electro tests and he comes back and say you have GUILLAIN-BARRE (GBS) so now you will be admitted in to the hospital for at least the next 5 days and inpatients rehab until you can take car of yourself. No leaving the hospital to settle your affairs just being admitted. YEAH!!! I should also add I have COPD.
Well I’m still in the hospital but there is some good news I hope. They put med on IVGI – A very high dose of intravenous immunoglobulin’s (400mg/kg) for 5 days in hopes of suppressing my
immune system and taking it out of over drive so that it will stop attacking my nervous system. The good news is that after 2 treatments I have regained my sense of taste and my legs are twice as strong –with reflex as they were when I came in I had no reflexes in my legs and little in my arms. I guess the reason that I am responding is that I have to agree with gdv24 the medical community needs to be aware of the more rare diseases, the out of the ordinary, to have and open mind when they see symptoms they do not understand. They hold our lives in their hands. In turn when we get blown off because they dint know we can’t give up.
I don’t know what the future holds fore me I don’t know what residual affects there will be I only hope to be around d to see my children grow up.
Keep the faith……we have each other to talk to!!!!
But I guess I should start at the beginning. On 1-22-09
I woke up with tingling in the tips of 4 fingers on my right hand and the tip of my tongue. I really didn’t think too much about it as I was going to see my pulmonary DR the next morning. 1-23-09 I went to the DR and he just said that I probably slept on it wrong and that the feeling would come back and to follow up with my regular DR for my high blood pressure. That night I lost my sense of taste and the feeling my lips. 1-25-09 I was grocery shopping and had to leave early because my legs were so tired I could hardly stand. 1-26-09 my calves are sore it feels like I climbed the Rockies in one day, and my feet are now numb. I call the doctor to follow up and mention I need the doc to check into this numbness the nurse didn’t seem concerned, follow up for 1-29-09. 1-27-09 I begin to feel the numbness in both of my legs, not bad but I just seemed clumsy, I began to get scared. 1-28-09 it was very difficult to walk without using the walls and furniture for stability.
Now I am really scared …. I’ll find out tomorrow!
D-DAY 1-29-09 The DR did some simple tests and said he would be right back…..he came back in and said that I had to go to neurology???? Didn’t Say why just go now!
So I go to neurology and they do some tests and an electro tests and he comes back and say you have GUILLAIN-BARRE (GBS) so now you will be admitted in to the hospital for at least the next 5 days and inpatients rehab until you can take car of yourself. No leaving the hospital to settle your affairs just being admitted. YEAH!!! I should also add I have COPD.
Well I’m still in the hospital but there is some good news I hope. They put med on IVGI – A very high dose of intravenous immunoglobulin’s (400mg/kg) for 5 days in hopes of suppressing my
immune system and taking it out of over drive so that it will stop attacking my nervous system. The good news is that after 2 treatments I have regained my sense of taste and my legs are twice as strong –with reflex as they were when I came in I had no reflexes in my legs and little in my arms. I guess the reason that I am responding is that I have to agree with gdv24 the medical community needs to be aware of the more rare diseases, the out of the ordinary, to have and open mind when they see symptoms they do not understand. They hold our lives in their hands. In turn when we get blown off because they dint know we can’t give up.
I don’t know what the future holds fore me I don’t know what residual affects there will be I only hope to be around d to see my children grow up.
Keep the faith……we have each other to talk to!!!!
My husband contracted GBS about 2 months ago. He came down with an infection (fever, aches, nausea, dizziness) and he thought he was coming down with the flu so he decided not to see the doctor thinking he could shake if off. Unfortunately during this time he was running a really high fever and was becoming very dehydrated. I finally convinced he to see his doctor and when he went to his appointment, the doctor told me to take him to emergency right away.
He was hospitalized for about a week. Doctors ran all kinds of test but could not find source of infection so just kept pumping his body with antibiotics. His fever finally broke on the 4th day and they released him on the 6th day so I took him home.
He seemed fine when he came home but the next day he started developing pain in his toes. By the 2nd day the pain had traveled up to his knees. On the third day I took him to the doctor and he said maybe it was just weakness from being hospitalized for so long so he said to give it a few more days to see if he improved. By the fourth day he was falling down and he was having a lot of pain in his legs, arms and hands. On the fifth day I try to get him in to see a Neurologist with no success so I ended up taking him back to ER.
As soon as the ER doctor saw his condition he told us he was sure it was GBS. Since we had no idea what that was he explained the illness to us and to prepare ourselves for the illness to make him sicker before it made him better. He also told us to expect his stay in the hospital to be anywhere from a week to a month, depending on his recovery. Thank God for PPO Insurance.
They placed him in the Intensive Care Unit and did a spinal tap to make sure he did in fact have GBS. Once they were able to determine that’s what he had he was started on the IVIG Treatment. Yes we also found out the cost for this stuff. Unbelievable! By the second day we started to see some improvement. Though it was very small improvement the doctors were very happy he was responding to the treatment.
He spent a week in Intensive Care and was then transferred to Rehab where he spent another 2 weeks. Because his recovery was going so well, the doctors agreed to send him home and just told him to be sure and keep up with his exercises and appointments.
I have done research on GBS and have friends that work in the Medical (Research) Field and they have spoken to us about the illness. GBS patients have to go through a long and slow recovery process. There are some patients that will experience permanent damage and others will have full recovery. My husband's Neurologist performed some nerve tests on his legs and said from what he was able to see, he will have about 100% recovery, it just may take about a year for him to fully recover.
There really isn't much more information available or research that shows the exact reason this illness develops in some people and not others. We do understand most of the time it comes on after suffering a bout with a bad infection then for some reason GBS will start attacking the nervous system. Since most people don’t realize what is happening to them, some will not seek medical attention until they are extremely ill and doctors beleive that is the reason some will suffer long term permanent damage. The doctors tell us because we sought medical attention right away, it may have helped with them being able to control to progress. My husband's symptoms started with his feet first but we also learned for some people it starts from the head down and they will suffer worse symptoms.
Right now his biggest complaints are pain in his calves arms and wrist. He also gets tired very easily so his doctor prescribed a walker for him. I though for sure he would refuse to use it but believe me, he cherishes that thing. His doctor also gave him pain medication, which I keep in my purse and monitor his dosage. He still loses his balance when he stands up and though I try not to push him too much, I still try to get him to go out and walk as much as possible and I make him work on his hand exercises the therapist told him to do. Play dough works great and so does having him wash the dishes for me, but not the breakable stuff. The biggest relief for him was when he was finally able to take a bath on his own and dress himself, which he was not able to do the first week he was home. I just made sure to get him shorts with no buttons and t-shirts since he can’t grasp the buttons or zippers.
Everyday is a struggle for him and I still see his frustration in not being able to do little things like take the cap off the water bottle, hold a coffee cup with one hand or being able to pick up our small dog. I try to be patient and give him as much support as I can but believe me sometimes it's hard for me too. You really need to have a positive attitude and believe things will get better. I know he may be out of work for a few more months and I dread how it will affect us financially but I also think of his health first and we just take it one day at a time.
He was hospitalized for about a week. Doctors ran all kinds of test but could not find source of infection so just kept pumping his body with antibiotics. His fever finally broke on the 4th day and they released him on the 6th day so I took him home.
He seemed fine when he came home but the next day he started developing pain in his toes. By the 2nd day the pain had traveled up to his knees. On the third day I took him to the doctor and he said maybe it was just weakness from being hospitalized for so long so he said to give it a few more days to see if he improved. By the fourth day he was falling down and he was having a lot of pain in his legs, arms and hands. On the fifth day I try to get him in to see a Neurologist with no success so I ended up taking him back to ER.
As soon as the ER doctor saw his condition he told us he was sure it was GBS. Since we had no idea what that was he explained the illness to us and to prepare ourselves for the illness to make him sicker before it made him better. He also told us to expect his stay in the hospital to be anywhere from a week to a month, depending on his recovery. Thank God for PPO Insurance.
They placed him in the Intensive Care Unit and did a spinal tap to make sure he did in fact have GBS. Once they were able to determine that’s what he had he was started on the IVIG Treatment. Yes we also found out the cost for this stuff. Unbelievable! By the second day we started to see some improvement. Though it was very small improvement the doctors were very happy he was responding to the treatment.
He spent a week in Intensive Care and was then transferred to Rehab where he spent another 2 weeks. Because his recovery was going so well, the doctors agreed to send him home and just told him to be sure and keep up with his exercises and appointments.
I have done research on GBS and have friends that work in the Medical (Research) Field and they have spoken to us about the illness. GBS patients have to go through a long and slow recovery process. There are some patients that will experience permanent damage and others will have full recovery. My husband's Neurologist performed some nerve tests on his legs and said from what he was able to see, he will have about 100% recovery, it just may take about a year for him to fully recover.
There really isn't much more information available or research that shows the exact reason this illness develops in some people and not others. We do understand most of the time it comes on after suffering a bout with a bad infection then for some reason GBS will start attacking the nervous system. Since most people don’t realize what is happening to them, some will not seek medical attention until they are extremely ill and doctors beleive that is the reason some will suffer long term permanent damage. The doctors tell us because we sought medical attention right away, it may have helped with them being able to control to progress. My husband's symptoms started with his feet first but we also learned for some people it starts from the head down and they will suffer worse symptoms.
Right now his biggest complaints are pain in his calves arms and wrist. He also gets tired very easily so his doctor prescribed a walker for him. I though for sure he would refuse to use it but believe me, he cherishes that thing. His doctor also gave him pain medication, which I keep in my purse and monitor his dosage. He still loses his balance when he stands up and though I try not to push him too much, I still try to get him to go out and walk as much as possible and I make him work on his hand exercises the therapist told him to do. Play dough works great and so does having him wash the dishes for me, but not the breakable stuff. The biggest relief for him was when he was finally able to take a bath on his own and dress himself, which he was not able to do the first week he was home. I just made sure to get him shorts with no buttons and t-shirts since he can’t grasp the buttons or zippers.
Everyday is a struggle for him and I still see his frustration in not being able to do little things like take the cap off the water bottle, hold a coffee cup with one hand or being able to pick up our small dog. I try to be patient and give him as much support as I can but believe me sometimes it's hard for me too. You really need to have a positive attitude and believe things will get better. I know he may be out of work for a few more months and I dread how it will affect us financially but I also think of his health first and we just take it one day at a time.
Thanks for your thoughts.
Have googled big time.
Will keep trying.
Lots of sites about it.
But all the support groups are deadends.
No worries hope your doing well!!!!
Have googled big time.
Will keep trying.
Lots of sites about it.
But all the support groups are deadends.
No worries hope your doing well!!!!
GBS is so rare (I think 2 people per 100,000 ---- something like that), that I doubt there is a support group where you live. I would consider googling, "Guillain-Barré syndrome support group" on the internet and starting there.
Good luck !!!
Good luck !!!
I was wrong she has had the IVIG that dog lady had. 2 lots 5days each.
She is in mater private brisbane. You know I have e-mailed every single GBS support person in Qld on the GBS support website and they have all been returned to me by the administrator.
Does anyone know of a support group or contact in Brisbane who I can talk 2.
Mum,'s mind is so muddled it is a concern. but all the DR's say its normal.
She is crying all the time. Even the nurses ring me 2 go up because she is so upset.
I asked the Doc and he has put her on very mild anti-depressats. But they will take 2-3 wks to help. In the meantime I'm stressed and lost. And my dad is a mess.
I'm atually a very strong person, and am dealing with it. but boy is it hard.
Although my Mum is the 1 with GBS not me.
She is in mater private brisbane. You know I have e-mailed every single GBS support person in Qld on the GBS support website and they have all been returned to me by the administrator.
Does anyone know of a support group or contact in Brisbane who I can talk 2.
Mum,'s mind is so muddled it is a concern. but all the DR's say its normal.
She is crying all the time. Even the nurses ring me 2 go up because she is so upset.
I asked the Doc and he has put her on very mild anti-depressats. But they will take 2-3 wks to help. In the meantime I'm stressed and lost. And my dad is a mess.
I'm atually a very strong person, and am dealing with it. but boy is it hard.
Although my Mum is the 1 with GBS not me.
Pres FDR had it
He did not have polio
His most probably cause of death was advance Autoimmune Hemolytic Anemia that his doctors missed
He got too close to the vapors of warfare (a chemical exposure) when as Assit Sect of the US Navy in 1917 he got as close to the front lines as they would let him get.
On the return voyage he came down with a 'strange influenza'
Do you recall a serious flu or any flu-like symptoms such as diarrhea unrelated to dietary issues?
He did not have polio
His most probably cause of death was advance Autoimmune Hemolytic Anemia that his doctors missed
He got too close to the vapors of warfare (a chemical exposure) when as Assit Sect of the US Navy in 1917 he got as close to the front lines as they would let him get.
On the return voyage he came down with a 'strange influenza'
Do you recall a serious flu or any flu-like symptoms such as diarrhea unrelated to dietary issues?
They have given her to lots of plasmaphersis, called oxyplasma I think. I do know its made from blood. 2 lots of 5 days.
Hi ! I'm sorry I just saw your reply to me. I have Chronic Fatigue Immune Dysfunction Syndrome. It amazes me how physicians know that GBS is real and how it could be fatal, but some of them still don't believe that CFS is real. Of course the suspected cause or trigger appears to be the same.
Hi, my mum has GBS.
Spent 3.5 wks in ICU with a trecky in, has very bad paralysis all over.
She is in a normal ward now.
Can breath and eat soft food now, she can also talk.
Major head scrambles, and it's like she is dilusional.
I'm finding it very hard to deal with as she does not seem to understand
and just wants to get up and shower and go home.
She is contantly asking me to call the police, anything to get her out.
She had 2 lots of Oxy something for 5 days each.
can anyone gie me some hints.
Lost I miss my mum.
Spent 3.5 wks in ICU with a trecky in, has very bad paralysis all over.
She is in a normal ward now.
Can breath and eat soft food now, she can also talk.
Major head scrambles, and it's like she is dilusional.
I'm finding it very hard to deal with as she does not seem to understand
and just wants to get up and shower and go home.
She is contantly asking me to call the police, anything to get her out.
She had 2 lots of Oxy something for 5 days each.
can anyone gie me some hints.
Lost I miss my mum.
Hi, thanks a bunch for the info. What kind of disease do you have if you don't mind revealing it? Are you able to work? regards......Doglady2007_pugs
but the doctor said I had extensive nerve damage and could take up to a year to recover.
Hi ! What your physician said is correct... or at least that is what they told my friend (former co-worker) who had it. In his case, he was walking about a year after being diagnosed with GBS. He still had some difficulties.. but was able to work again. He had the illness after a short bout with a flu virus.
I'm happy that you have an autoimmune illness that you will recover from. It's a terrible thing to have... isn't it ? Although I don't have GBS, I do have a condition where I have weakness, fatigue, muscle aches, tingling, unrefreshing sleep, etc. etc. I can relate to how frustrated you feel.
I do wish you a full & speedy recovery ! I just googled and found a support group online for GBS patients... here's the link if you are interested in communicating with others who have these autoimmune condition :
http://www.gbs.org.uk/support.html
Best,
PlateletGal
Hi ! What your physician said is correct... or at least that is what they told my friend (former co-worker) who had it. In his case, he was walking about a year after being diagnosed with GBS. He still had some difficulties.. but was able to work again. He had the illness after a short bout with a flu virus.
I'm happy that you have an autoimmune illness that you will recover from. It's a terrible thing to have... isn't it ? Although I don't have GBS, I do have a condition where I have weakness, fatigue, muscle aches, tingling, unrefreshing sleep, etc. etc. I can relate to how frustrated you feel.
I do wish you a full & speedy recovery ! I just googled and found a support group online for GBS patients... here's the link if you are interested in communicating with others who have these autoimmune condition :
http://www.gbs.org.uk/support.html
Best,
PlateletGal
Hi, glad you commented. I was put into the hospital and given IVIG treatments. These are immune globulin (human), I was given one iv bag every day for 5 days, the nurses called it "liquid gold" because each bag costs $6,000! The doctors said it would shorten my recovery time and make my recovery better. They had also mentioned plasmapheresis. I don't have this in as severe form as some people that I have heard about, I didn't require a ventilator(thank God!) and I wasn't paralyzed in any way. My face was affected very much, but only in the first week. I couldn't talk, couldn't chew my food, but I could swallow. I had to use a straw and pinch my fingers around it to be able to suck the liquid into my mouth. When I ate, I had to take very small bites and chew and then take my finger to move the food around to chew it enough to swallow. They had given me massive dosages of prednisone the first few days (80mg per day) and then did the spinal tap and sent me home with no instuctions on the prednisone, called doctor and said to start on just 40 mg per day. Then was put into hospital for IVIG treatments. I haven't seen tremendous results yet, but the doctor said I had extensive nerve damage and could take up to a year to recover.My face is much better, can speak and eat and have no paralysis, just some residual weakness that may be permanent, but I can live with that.I still have a lot of weakness in my legs and some in my arms, but I am able to walk, but just not for too long or for too far. My balance is not good, but I don't feel as if I am going to fall. I'm wanting to be able to communicate with any one who has had this to compare notes and experiences, although I know every case is not the same. I have read on the internet that in 60% of the cases, there is no known cause. I have read that the flu shot is sometimes held responsible, but I have read that this is rare. The doctor asked me if I'd had a respritory infection, which I hadn't, or if I'd been sick, which I hadn't.Did the person you knew who had GBS have any illness just before being dx with it? How badly did they have it and how long did it take to recover and did they have any paralysis or require a ventilator when first ill?I was dx in April, 2008 and have the tingling in my arms and the back of my neck come and go, and I'm assuming this is from the damaged covering on my nerves still flaring up, but I don't know why it doesn't do it all the time. Maybe the ivig treatments helped with this? I don't like to keep calling the neurologist every time a new symptom or question comes up, so I usually wait till my next appt.I have moderate pain in the middle lower back when I stand or walk, but it subsides as soon as I sit down or lay down. This I can't figure out as most back pain doesn't go away so easily. But I'm sure not complaining! I can't work for any length of time as I get weak and fatigued, just have to take frquent rest breaks. Its frustrating to tackle a chore that should take maybe an hour and it takes 3 hours!I told one of the nurses when I was in the hospital that I was always healthy and hardly ever got sick even when every one else was sick, and she said she'd had a lot of GBS patients say the same thing.So go figure! If I do too much one day, then the next day or two, I,m completely wiped out. I still consider my self very fortunate, as I will recover from this, and with M>S> and many other autoimmune diseases, its a life long and some times fatal condition. I've told people that if I'm one or two people in 100,000, why couldn't it be like in the lottery instead of this? Guess my number just came up! Hope some one will respond, regards.....
I know someone who had it. I know that it frequently occurs after having a flu shot or getting the flu.
How are they treating you ? Plasmapheresis ?
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