Brother has GBS – need info

    • Anonymous
      April 2, 2008 at 11:38 pm


      My brother has been in the hospital for the last 10 days with GBS. He has very limited movement in his legs, can move his arms(right better than left) but both are extremely weak, he has numbness in his face and has trouble drinking and eating. His eyesight is now starting to get worse. Breathing is okay… hasn’t gotten worse over the last few days – no respirator. He has gone through two rounds of the IVIG Therapy. He has not been given Plasmapherisis yet. Our family has been by his side every day – stretching his arms and legs and doing what we can to make him comfortable. He is obviously very scared and I want to make sure i do whatever I can to help him. I am wondering if some of you have advice to share. Is there anything we are not doing that we should be? Any help you can give us is much appreciated.

      P.S. He is at a hospital in San Diego. I read that there are people within this group who sometimes visit the patient/family in the hospital. Is this true?

      Thanks, Jack

    • Anonymous
      April 3, 2008 at 12:00 am

      I remember being in a lot of pain during the first few weeks so touch was not always a positive thing but what I did crave was range of motion exercises. It felt so good to be moving even though I couldn’t really feel it physically. I was totally paralyzed and on life support. I also appreciated having my pillows placed in ways that provided support to my limbs. Make sure you ask your brother what he would like that would help him feel comfortable. Everyone on here will tell you something different because GBS affects each of us differently. I was most afraid in the nights and would not sleep because I thought if I was going to die it would be during the night. I rested better when someone stayed with me during the night and felt settled even if left alone during the day.

      The one thing that was often ignored for me was my mental and emotional well-being. Make sure that your brother gets lots of opportunity to ask his questions and that he gets answers that are sufficient to alleviate his fears and concerns. This disease is frightening and I know so many times I felt my questions were ignored or not given creed. I also craved spiritual support and that was not always made available to me. If your brother is spiritual in nature, you may want to ask him if he would like someone to visit….a pastor or mentor that he would like to come and pray with him.

      Because I was in ICU, I was very isolated from the world and what was going on out there so I really appreciated my brother who would pick up all the latest newspapers and read the headline stories to me. (I wasn’t allowed a TV in ICU). The days can be long so my husband would get me audio books from the library that the nurses would put on for me so that I had some entertainment!

      I hope this helps. The best thing is to ask your brother what he needs. Hopefully he will not need to go on life support but should that happen you will already know what he would like in the way of support and comfort. As someone who has been in your brother’s shoes, I can’t say enough how important having my family at my side was for me. I felt safe knowing they would look out for me. I am so glad your brother has that same blessing.

      Let me know if I can be of further support and remember, we are all in this together. Best wishes and prayers.

    • Anonymous
      April 3, 2008 at 12:22 am

      Thank you, Janet. This information is very helpful. I appreciate your time, best wishes, and prayers.


    • April 3, 2008 at 12:27 am

      I just sent you a private message 🙂

      Jan—you gave some great advice!

    • Anonymous
      April 3, 2008 at 10:52 am

      Hi Jack,

      The liaison in your area may be able to come out and visit your brother, or send someone who may be able to visit him. If you havent registered with the foundation, the go to the site and register and they will send you some info, including the latest ‘newsletter’ the Communicator with liaison contact details. There seem to be 2 liaisons in your area, I can message their details to you if you need them, just let me know.

      Regarding the IVIg ……. a session/round of IVIg [I]generally[/I] is given over a 5 day period. Not sure if you know this, but IVIg does not stop the progression necessarily, so you could still see a downward progression for a few days afterwards – the latest protocol seems to be that if some kind of improvement (and it could be very small) is not seem within two weeks after the first session of IVIg, then a second round or session is given. To give plasmaph. a few days after IVIg would be couterproductive as it would wash any good that the IVIg could be doing, out of the body.

      Jan covered a very important part, and it is very important to take that advice. There is a thread called, something like ….. “What I wish they knew” that has a few helpful hints. If you do a search on that phrase, you will come up with it in some of the search results. Some of the stuff deals with ICU, and some with rehab etc.

      You seem to be doing a wonderful job in caring for your brother, the moving of his limbs etc. is very important. Does he have AFO’s or boots to keep his feet from getting drop foot?

    • Anonymous
      April 3, 2008 at 11:14 am

      Hi Allison,

      Thanks for the feedback. It is very helpful to hear that the doctors don’t start Plasmapherisis to close to the IVIG treatment because it is counterproductive. Knowing this eases my mind a bit.

      I have not heard of drop foot before. He only has socks for his feet. He does wear an air sleeve around his calves that pulsates to keep the blood flow going. Is there something he should be doing with his feet as well?

      Thanks for your help!


    • Anonymous
      April 3, 2008 at 11:32 am


      Foot drop is a real concern and if it occurs can really cause pain and discomfort during rehab. The tendons and muslces contract and tighten and then it is hard to get the foot at a 90 degree angle. He should be wearing a splint or have a board at the foot of the bed that will keep his foot at the 90 angle. It will definitely make his recovery easier. Insist on having this for him!

      I also encourage you to do range of motion exercises with the foot. It involves rotating the ankle, flexing it up and down. Has your brother been seen by a therapist? I had therapists visiting me from almost day one and a lot of the issues other experience I was able to avoid due to the care the therapists gave me. They also taught my family how to do the exercises so that I would not get atrophy in my muscles, and my joints would stay limber. My family made sure I got range of motion every hour or two during the day. In the end, that was one of the best things they could have done for me.

      It is great that you are asking questions. There is some good advice to be had here. I had GBS when IVIG was not used and only had plasmapharesis so can’t advise on that arm of treatment but will say the plasma treatments did give me improvement. But again, didn’t have IVIG so you need to listen to the advice of those who have had that form of treatment.

      Don’t forget to take care of yourselves as a family. I can’t say enough how important our families were to our recoveries, so take care and be well. I always remind caregivers to take care of themselves. To quote someone I work with….”Be prepared to give support. but also be prepared to accept support.”

      Keep us posted. Best to you and your family.

    • Anonymous
      April 3, 2008 at 11:48 am

      Hi Janet,

      Thank you. I wasn’t aware of Drop Foot. His feet are one area that we have not been focusing on, so I just called my other brother who was on is way to the hospital and told him to work his feet out and make sure that the nurses understand that they neet to rest at a 90 degree angle. Thank you for the tip.

      Our family has been doing range of motion exercises with him throughout the day, but I don’t think he has been seeing a physical therapist on a regular basis. We are going to push for them to do this for him now though.

      Thank you! Jack

    • Anonymous
      April 3, 2008 at 12:05 pm


      Just one caution. Don’t overdo the exercise/therapy. A little bit, more frequently is better than trying to do a lot at once. With GBS, the nerve sheath is being destroyed and we tire so much easier. The nerves need time to repair, so don’t rush this or be in a hurry, as improvement is slow, gradual and different for all of us!

    • Anonymous
      April 3, 2008 at 1:32 pm


      Have the doctors spoken to you about Plasmapharesis? Just a little curious about your mention of it in the first post.

      Regarding the air sleeve ….. Lately a lot of the patients I see do have that air sleeve, it seems to be an all in one that combines the “boot” for the foot and goes up the calves (I hope that makes sense). Maybe that is the same as your brother has? I know you said he has socks on his feet, but the ‘boot’ part is not something that completely covers the foot, it is open at the toes, but covers the heel and ankle to give support. This also is not something that is kept on the foot 24 hours a day, the times vary.
      *Your brothers bowels at this point are something that you also have to keep a sharp eye on. He may not feel the urge to empty them because of paralysis, but if they are not emptied somehow it can cause another set of complications. Keep asking him about stomack discomfort, and ask the doc to keep checking by feeling how full they seem to be. Uncomfortable but necessary for some patients are enema’s.
      * Do you find your brother is very hot, this is common and it is also important to keep his body cool because it is incapable at this point to cool itself down. Feet however sometimes tend to get very cold when the rest of the body is overheated.

    • Anonymous
      April 3, 2008 at 1:52 pm

      Hi Janet,

      The air sleeve only goes around his calves, but he can move his feet back and forth, so I think he is keeping the blood flowing in his feet pretty well.

      I will check on his bowel status. He has complained of some tightness in his abdomen, so this might be an issue. Thanks for bringing it to my attention.

      He hasn’t complained about being too hot or cold that I know of, but i will check with him.


    • Anonymous
      April 3, 2008 at 6:28 pm

      Sorry to hear about your brother… I was in the hospital for 6 days back in nov. 2007 with gbs caused by flu or tetanus shot…It was the most painful of my life… I was wondering if he is complaining about back pain.. I remember it was excruciating, as well as terrible headaches, and very very painful, sensitive feet, (I kept my feet exposed)…I never had the plasma exchange but was very close,,,
      It sucks to have this but, I would think anyone on this site will help, and the info packet this foundation has is good background…Someone mentioned Bowel movement, that was a biggy for me as well, and they finally gave me an some kind of inducer on day 4 or 5: I know swallowing was difficult, and I bit my tongue alot, and things tasted metallicy…I had a tough time filling out meal slips and opening meal containers, so make sure he gets help…
      How old is he and how fast did it come on? That could be a good indicator how fast he recovers…Has the numbness tingling weakness run its course? Did they get it diagnosed correctly quickly?
      Again, I’m sorry to hear about his dilemma…I’m here to tell you my story, just to give you an idea that I was about as bad as you brother, and now it is 5 months later, and I have slight numbness in fingers/toes.. Yesterday, I jogged on the treadmill for a couple minutes for the first time…I went from wheelchair/walker/cane/walking/jogging…. I’ve had one mini relapse, that was treated with ivig that helped greatly…
      We will keep your families in our prayers…deanop

    • Anonymous
      April 3, 2008 at 7:14 pm

      Hi Deanop,

      I believe the loss of feeling in legs started about 14 days ago. He went to an emergency clinic and they told him he was fine. He went home and then collapsed 2 days later and was rushed to the hospital. He has been in the hospital ever since(1 day in ICU when his breathing became labored). He has minimal movement in his legs(can move feet and lift legs about an inch off of bed). Arms are moving okay, but very slow and weak. His face has gotten numb and eyesight blurry. He did feel his face and arms were getting better today. He needs help eating and can only eat soft foots. He can’t control his tongue and mouth very well(swallowing also difficult).

      I am asking my other brother to check on his bowel movement situation as i am out of town. He does have bad back pain. He thought this was due to the beds and a pre-existing back problem. This is a big issue for him though, as he has trouble getting ANY sleep due to the back pain. He is 50 years old.

      I am glad to here you are progressing well. I would be ecstatic if he could recover as well as you have so far.

      Thanks for the insight.


    • Anonymous
      April 3, 2008 at 8:23 pm

      That back pain is a big telltale sign of oncoming gbs..I had bad bad back pains: I couldn’t sleep hardly at all…Of coursek, hospital beds are as bad as can be…They tried to put an inflatable egg shell type mattress on top of the hospital bed..It didn’t help me, but maybe it’ll help him…I took a lot of pain medications in the hospital, everything possible short of morphine for the back pain..But am glad I didn’t take morphine, and the pain did go away.. I also remember a lot of nausea.. They didn’t get real concerned about the bowel thing, until they needed a sample to test for chicken bacteria (a common cause of gbs..)..
      I didn’t have eye problems per se.., and can’t say how serious it’ll be..I couldn’t move my legs or arms without help…They really screwed up my original diagnosis, and I pretty much collapsed on 4th time seeing a doctor in er.., who did a spinal that showed super high protein… I’m 46, and things probably stabilized by my 3rd day in the hospital…Strength and mobility is gonna return, but like everyone says, just be patient…I am probably the most impatient person on the planet, but even I have learned to take it a little more slowly…Although, I still think I’m gonna meet my goal of getting stronger than ever…..You should look at the many postings people have on their recoveries..I started sneaking out of my hospital room, and used the internet in the family room (with the mrs’s help, and a wheelchair) to study up on this stuff…Remember he has about an 80-90% chance of full recovery…take care…deanop

    • Anonymous
      April 3, 2008 at 8:51 pm

      Couple more things about this crazy gbs…I am right handed, right legged…After this gbs attack my left leg and arm became the stronger side and still are! I hope physical therapy are spending time helping with his range of motion in his limbs..I still am trying to get some of that back…

      I had breathing problems, and they tested me to see if lung capacity was getting better or worse every few hours…They did this I think to determine about respirator/ or future plasma exchange…I don’t know if its true but I think some people actually recover quicker with plasma exchange…

      again, take care…deanop

    • Anonymous
      April 4, 2008 at 12:49 pm

      Hello Jack, I am 53 years old and got it around the same time as Dean. I too had the back pain that was unbearable. Lost alot of sleep cause of it . I finally got the hospital to change the matress. Mine came on like lightning.
      The first hospital I went too didnt dx me . So I went to Uof M the next day and they figured out what I had right a way.My feet hurt so bad at the start that I wore my tennis shoes day and night. I have slight drop foot now. I wish someone would of pulled my feet . But in reallity I didnt want anyone to touch me ,because of the needles that would result.Everyone is differnt in their recovery.I am back to work with great pain in my feet. But o well it hurts when at home too,so I might as well be making money with my soar feet. What helped me was a close friend had it 10 years earlier , and he called me alot and visited and would asure me that it does get better.
      Tell your brother that we all said we know what he feels and it does get better.

    • Anonymous
      April 4, 2008 at 8:54 pm

      Thanks, Ron. I will definitely pass along your message to him. My family has been reading all of the messages to him and he appreciates it. He has made some prgress in the last two days. The doctors say he is getting stronger and he feels that he has less numbness in his face and more movement in his arms. I spoke with him about the Drop Foot. He does have some movement in his feet, so he has been moving them back and forth and flexing them as much as possible. He is not wearing a splint on his feet, but feels that they will be okay as long as he can keep them moving throughout the day.

      Thanks for your help. All the best!


    • Anonymous
      April 4, 2008 at 11:23 pm

      Glad to hear your brother is feeling better and getting stronger. He is very fortunate to have not needed life support. That is a hell in and of itself! I was reading some of the other posts and had totally forgotten about the back pain. I had that pain but always thought it was because of having a bad back and sleeping on a hospital bed. I never thought about it as being part of the GBS. I had an air mattress on my hospital bed and that brought me some relief.

      Talk to you again soon. Have a good weekend! 🙂

    • Anonymous
      April 5, 2008 at 12:26 am

      Thanks, Janet.

      He is making some progress, but I just found out that his eyesight is still very blurry. Did this happen to you? Do you know if the eyesight improves quickly or could he be dealing with this for a while?

      Thanks, Jack

    • Anonymous
      April 5, 2008 at 3:20 am


      The eyesight thing is part of the GBS attack………….it should improve, as does his overall condition. Not to worry too much about that.
      Say hi to your brother and let him know he WILL get better, just got to go through Hell first. Your story reminds me of how much love I have for MY brother, who was with me every step of the way. He was sooo scared for me. Brothers aren’t heavy are they???


    • Anonymous
      April 5, 2008 at 12:13 pm

      I can identify with your brother’s fear. I went through my episode in Sept of 2006. The worst part is I am an occupational therapist and pretty much had a strong suspicion I had gbs with my symptoms. My neurologist did a fantastic job diagnosing me quickly. Being a therapist I knew what I was in for and actually had worked with a gbs patient in the past. If they have treated with ivig then that is the best alternative to utilize. It is a precarious time during the onset because of the wide range of symptoms but once he has “turned the corner” things will improve for him. Getting to that point is the most difficult. The healing process for the myelin sheath (the covering on the nerves) takes time and will occur over time. Everyone’s situation is different due to variances in severity and damage (axonal damage takes longer and has a worse prognosis for recovery). Just being there for him to support and reassure him will be therapeutic. This website and the people who visit are very informative and a great source of comfort and support. Please let me know if I can answer any questions. It sounds like you are doing what you can at this point. The tightness in the abdomen may be due to damage to the nerves that innervate the muscles as well. I wish you all luck and hope and pray he makes a speedy recovery.
      Dave Tornabane

    • Anonymous
      April 5, 2008 at 4:09 pm

      Hi there!

      I had visual problems that only lasted a week or so. I had double vision. It was one of the first things to improve for me. As to Perry’s comment about brother’s, isn’t it funny, but it was my brother who was there almost every day for me, inspite of having a young family. He always found the time to stick his head in just to let me know I was being thought of. Today, we are best of friends….and I love him to death. My sisters, who I thought would be the ones, I seldom saw. They lived further away though so I cut them some slack!

      Keep plugging….

    • Anonymous
      April 6, 2008 at 11:45 am

      Hi Perry, Ron, Dave, Dean, and Janet,

      Thanks for your reassuring messages over the last couple of days. I share them all with my brother and I he really appreciates hearing from each of you.

      My brother is doing a little better. His speech is improving as well as his eye sight. Not really any improvement yet in his ability to move arms and legs, but he looks to be past the critical stage and is still breathing on his own without any real problem. I am extremely thankful for this.

      Anyway, thanks for your help. This forum has been a huge help to me and my brother. It is amazing that so many of you have taken time to help me by relating your experiences and sharing your good wishes. It is very much appreciated. I hope my brother will be able to share his experiences as well and pay back the favor.

      Take care, Jack

    • Anonymous
      April 6, 2008 at 3:14 pm

      Hi Jack, I’m just tuning in for the first time in a couple of days. Just know that I am thinking of you and your family. You are all in my prayers.

      My onset with gbs occurred in March 2007 and I was in the hospital for a month. When the doctor told me to go to the er, my doctor was there along with the er doc. The er doc was going to send me home but when I got up to walk I just fell to the floor. My doctor called a neurologist and it didn’t take him long at all to figure out what was going on. Fortunately, I don’t remember a lot of things that went on. I do remember the spinal tap, plasmaphareses, ct scan and some of the other scans they did.

      I wear glasses anyway so I’m not sure if my eyesight was affected. I did have numbness in the left side of my face. I was basically totally paralyzed. I couldn’t feed myself and really couldn’t “feel” my internal organs (stomach muscles, bladder, etc) I retained a whole lot of fluid and my legs and feet were really sensitive..I could not sleep with blankets on my legs.

      A year has past and I still have numbness in my hands and my feet but I am doing GREAT! I had alot of pt (occupational and physical). I too went from wheelchair to walker to cane and now I can walk with no help at all, within about 2 months . I was driving by July. I sometimes “wobble” but people only think I am intoxicated. I am driving now and doing about everything I ever did. It just takes me a little longer to do things.

      I don’t know if anyone has mentioned it but it may affect your brother’s concentration and short term memory so don’t get upset if he keeps saying the same things or asking the same questions over and over.

      Best to your brother and your whole family. He will be fine..just keep up the positive attitudes. He can do anything he wants…just takes time.

      Bless you

      Charlotte, NC

    • Anonymous
      April 8, 2008 at 8:53 pm

      I will echo many of the statements here. Having someone with me was an awesome encouragement. I was blessed with a retired Dad who stayed with me much of the week and brothers/brothers in law who took up the weekends.

      Range of motion exercises and pillows for support were great. I was so frustrated at being unable to stay on my side in a comfortable sleeping position.

      Also, a lot of patience goes a long way. I am sure I was wearing my caregivers out at time, but they were saints and didn’t complain.

      You are in my prayers and thoughts.

    • Anonymous
      April 9, 2008 at 8:38 pm

      Hi Jack,
      Just checking to see how your brother was progressing? Is he gaining strength or motion in his arms and legs? Did they figure out if the cause was viral or camplybactor bacteria? I was unable to lift my right arm more than 45 degrees of flexion (lifting the arm straight up with the elbow straight) for almost a week but now am able to lfit weights. My endurance is less but still able to run and do other things. Hope he is doing better.

    • Anonymous
      April 10, 2008 at 4:18 pm

      Good afternoon Jack,

      Just had a moment so wanted to check in and see how your brother was doing. I hope things are continuing to improve.

      Thinking of you and your family….

    • Anonymous
      April 10, 2008 at 4:42 pm


      the ivig is working if the decline stops, could take several weeks. recovery will come later. pp should not be given unless there is serious decline after the ivig cuz the pp will wash out the ivig & it may be working. & who knows, maybe the pp will not work. i live in san diego & would be glad to visit him. i’ll be home sometime saturday. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      April 11, 2008 at 8:18 pm

      Hi Jack,

      Just a note to let you know we are all praying for you and your brother and that everything is o.k. as it can be right now… Wednesday, I had an appt with neuro (actually a very knowledgeable nurse practioner), and went on another round of ivig… My plight is nothing if you look around at so many people in pain and sickness….Later on Wednesday, as I went for first round of Ivig I ran into an old coworker of mine from a few years back, and he was there due to cancer… Its hard to see old friends and acquaintences struggling, let alone family…… I guess one just never knows..Anyway, Just thought I’d share that with you and hope the worst is over for your brother, and all of you…Take care Dean

    • Anonymous
      April 24, 2008 at 4:57 am

      Hai jack,
      Hows ur brother now………….as far as my case ……….pls give the total support of ur family to him. Make him comfortable in every concern. Dont leave him alone. Make him turn from left to right and vise versa in the bed to get rid of the bed soars. Tell him that this is to be defeated by himself..he should have more will power to fight this thing. Nothing is impossible. in my case i myself am not beleiving what i am today. Its my second life. Now he is like a baby to take care in every aspects. May god bless him to recover soon.


    • Anonymous
      April 26, 2008 at 2:20 am

      To All:

      Thanks for the messages. My brother is doing very well. He moved into a rehab center about 10 days ago and started improving rapidly once he was there. He went from barely being able to stand with the help of a walker to walking 200 yards(with the walker) in the span of a week. His strength and spirits are really up. He still has some numbness on the right side of his face and a strange feeling in his hands and feet, but overall he is doing incredibly well. He went home today and is going to continue his rehab from there. He obviously still has a long road ahead of him, but we are all very thankful that he is making major progress.

      For what it is worth, my brother really fought aggressively against this disease. He refused pain medication whenever posssible… as he didn’t want it to weaken his body even more. While in the hospital, he constantly asked to have his limbs stretched and work on range of motion exercises. He had family give him massages throughout the day to keep blood flowing to limbs. When he got to the rehab center, he tried to do a little more than was asked of him IF he felt his body could handle it. I guess what i am trying to say is that he tried hard to control what he could control. He gave himself a goal to make it home one month after he went into the hospital and he almost pulled it off. He went home today(33 days after being admitted). He still has along road ahead of him, but I am really proud of him for fighting this disease so hard.

      All of your advice and thoughts and prayers have been extremely helpful as well. This forum provides a great service and has provided great comfort to our family.

      Thanks to all of you! I’ll continue to keep you updated.


      Jack Griffin

    • Anonymous
      April 26, 2008 at 3:30 pm


      Thanks for the PM and for the update here. It is so awesome to hear of your brother’s wonderful recovery. Yes, this is a long road for him, but it sounds to me like he as a great family who are committed to helping along the way. This in and of itself, can be one of the greatest measures of support that promotes healing. I believe I recovered as quickly as I did and as good as possible because of all the help and support I received from family and friends and even complete strangers. The prayers and wishes of some many people kept my spirit strong so that I could once again make my body strong. What a trememdous gift from them all!! And now you are receiving that same gift. It is a blessing!

      I look forward to the updates.