New to GBS

    • Anonymous
      August 20, 2008 at 4:30 pm

      I am new to these forums and new to GBS. I was diagnosed just a few weeks ago and had a pretty quick progression from just some numbness in my feet and hands to having trouble breathing. Very scary stuff. I went through the IVIG treatments and feel much better now. I can walk again and all the numbness is gone. This sounds like a success, but from reading many of the forum posts it sounds like there are a lot of relapses. Hoping for the best.

    • Anonymous
      August 20, 2008 at 4:35 pm

      I had GBS 20 years ago.

      I healed fairly well until 2007.

      I always had residuals such as weakness and numbness, but nothing that caused me a lot of issues.

      For some reason in 2007 I started a decline. New symtoms and issues.

      Still trying to track down exactly what happened.

      Hard to predict what will happen with you. At least you were able to limit the damage with treatment.

      You will have to learn to take it easy and not over do it. Lots of rest too.

      Feel free to contact me if you have any questions.

      Hang in there.

      Chris

    • Anonymous
      August 20, 2008 at 4:52 pm

      Brian,

      I Am New To This Also, I Haven’t Been Dx Yet, But I’m Glad That You Are Doing Much Better, Stay Healthy:)

    • Anonymous
      August 20, 2008 at 5:20 pm

      Hi Brian: Welcome to the forum. Sounds like you had a very fast recovery which is great. Everyone is diferent with GBS but a great many have problems with residuals rather than relapses. The most common form are fatigue, pain and some returning numbness. Take it easy until you learn if you are having residuals and how bad they are. Some don’t get them but be careful until you know for sure. Hope your recovery goes on as well. Jeff

    • Anonymous
      August 20, 2008 at 5:23 pm

      Brian, welcome! Sounds like you are doing great. One thing we will all tell you is you nedd to rest when your body tells you! Don’t over do it. Each of us recovers differently. It isn’t so much about relapses with GBS I would think, but rather an increase in residuals when we are stressed and/or tired, or if we have overdone it. Some people do relapse but that is not true for all of us.

      Take each day as it comes. If I could give you any advice at this point it would be to rest often and the minute you feel any weakness or fatigue, rest!

      Glad you found us. Take care and if you have any questions, don’t hesitate to ask. We all have a variety of experiences and are more than willing to share.

      PS- I am similar to Chris Legion of Doom so won’t repeat my story. It is also in other threads so I am sure you will run into it somewhere!:o

    • Anonymous
      August 20, 2008 at 5:50 pm

      Hi Brian,
      Welcome to the family. As you will learn we refer to GBS as Getting Better Slowly. Each individual is different in how they recover and what kind of residuals they have. It sounds like you are doing pretty good. However, this is overwhelming and can be discouraging at times so feel free to always ask questions and stay in touch. Take care and welcome again.

      sherry

    • Anonymous
      August 20, 2008 at 6:06 pm

      Hi Brian! Welcome to the site! I have CIDP! That to me is just as bad! But I am so happy they caught this in time and you are doing great! Don’t overdo it though! Let your body tell you if it’s tired and you need rest or telling you that you need to stop! Listen to your body! Glad to see you in here and hope you do well in recovery!

    • Anonymous
      August 20, 2008 at 6:27 pm

      Hello Brian and welcome, You should feel really blessed to have all numbness gone ,and on a fast recovery. Its been 10 months for me ,and the numb feet are still there. Do you know or suspect what triggered your GBS?
      Ron

    • Anonymous
      August 20, 2008 at 7:13 pm

      I have no idea what caused it or triggered it. My neurologist rattled off a lot of things that might have triggered it, but I have not had any of them, not even the flu shot. I do feel very blessed that it seems to have gone away, but it has only been a few days since my IVIG treatment, so I am crossing fingers and toes while I still can. I am glad to have found a great support community like this.

      – Brian

    • Anonymous
      August 20, 2008 at 8:23 pm

      Hello Brian,

      I am also new to GBS my mother was diagnosed six weeks ago and has a severe case. She has been intubated for the whole six weeks and now has a trach. She is paralized from her shoulders down with little feeling at all. She has had two sessions of the IV therapy and a session of the blood therapy also. She has been so sick. She has been in the ICU for the six weeks and we are looking every day for improvement. I am happy to hear that your case was not so severe I hope everything goes well for you.

      Anybody have any advice for me and my family to help get our mother threw such a hardship.

    • Anonymous
      August 20, 2008 at 9:43 pm

      Hey distressed Daughter! First off let me say how wonderful you are to be here looking for ways to support your mom. We would be no where if it weren’t for our caregivers. This is going to be as hard on you as a family as it will be on her. What ever you do, make sure you take care of yourselves also. You need to well, rested and healthy to help your mom through the times ahead. So welcome to our family here and let us help you where we can.

      I would recommend you go to the Family, Friends, and Caregivers thread. There is some really good stuff there for you as caregivers….advice, etc.

      I know that what was most important to me ( I was like your mom. Paralyzed, on life support, etc.) was to feel stimulated both physically but also mentally. I really appreciated range of motion exercises for my hands, arms, legs, and feet. I also liked when someone would read the newspaper to me, bring me news from home, etc. I had a board that I communicated with by blinking. It was time consuming, but when people took the time with me, it was wonderful. I could get my questions asked, etc.

      I had talking books from the library too. That filled some of the time. I was alone, 2 hours away from family and friends so the weeks were long until the weekend when my hubby could come. (We had 4 small children at the time so he needed to be here for them too.) Make sure she always knows what is going on. Be truthful. She will know if you aren’t and that can increase her stress.

      Overall, just being there, letting her know you love her is one of the greatest gifts you could ever give her. She needs that the most.

      Hugs to you all. Let me know if I can be of more help or if you have any questions…..

    • Anonymous
      August 20, 2008 at 9:49 pm

      Brian,
      Welcome to this world of GBS/CIDP. I am also fairly new to this site. I was diag. 16mo. ago & still have dumb & tingly fingers & feet & I walk with a rollator. But things are much better then they were 16mo. ago. I do IVIg tx’s every 3 weeks. I have never had plasma pheresis, but the IVIg is effective for about 3 weeks and then I know it’s time again for another tx.

      I think it is wonderful you have had a rapid turn around time. Just remember like others earlier told you. It is so important to listen to your body & get plenty of rest & don’t over do. Important to keep your stress level down. Stress can excelerate your symptoms.

      Keep up the good work & Continued Good Luck! 😉

New To GBS

    • Anonymous
      July 29, 2008 at 3:14 pm

      Hi, My name is Scott I am new to the site, I come down with GBS in Sept,2007. I was completely paralyzed from neck down and some facial weaknest. I am better I can walk now with AFO’s and most of everything is coming back slowly but surely, My hands has been one of the most that hasn’t come back, they are just now starting to.

    • Anonymous
      July 29, 2008 at 4:40 pm

      Welcome to the family Scott. There are a lot of wonderful people here to answer your questions, understand your frustrations, and support you through all your discouragements. Emma

    • Anonymous
      July 29, 2008 at 7:10 pm

      Hi Scott! I am new here also but have an unexplained CIDP with no treatment so far. Very nice site here and really sweet people in here! Welcome to the family. Yes! I feel like I joined a family!

    • Anonymous
      July 29, 2008 at 7:24 pm

      Hi Scott,
      Good to see you posting. I have a very dear friend who see’s a neuro at UA in Birmingham, are you still seeing a neuro and if so, where do you go?
      Glad to hear your hands are finally starting to recover. Keep us posted.

    • Anonymous
      July 29, 2008 at 8:15 pm

      YEs, I see a neuro. out of Penscola, Fl. I like him, but of course no one can give any answers.

    • Anonymous
      July 29, 2008 at 9:18 pm

      Scott:

      Welcome to our little community. I am glad that you found us but sorry you had to find us.

      There is no crystal ball with GBS. No one knows what your final recovery will look like. If doctors are not giving you answers, to me that says they are being honest with you. There is plenty of reason to have hope though. Things are beginning to come back. In a year you may think you had a miraculous recovery. You never know. No one knows what your final recovery will be like but you must always fight to get your life back.

      Scott, take care of yourself.

      Lee

    • Anonymous
      July 29, 2008 at 11:09 pm

      Hi Scott, Welcome to The Family! Feel free to ask as many questions as you have or vent whenever you need to. Take Care.

    • Anonymous
      July 29, 2008 at 11:38 pm

      This is the first time I have ever posted on the internet.My husband a year ago was an active all around guy.He could hunt,fish,bowl,ride a motorcycle,a member of two volunteer fire departments.Today he cant take a step without falling.At 53 he is using a walker with tennis balls!! Next is a wheelchair.In 2005 he went to Katrina with Verizon for 2months.Befor he left he had shots for HepA,Tetnus/Dipth.About 7 months later he fell and twisted his ankle.He went to therapy but it only got worse.Then the doctor thought it was a pinched nerve in his back.he then got footdrop.He continued to fall.He has excessive sweating,Cramping in hands.We went to a neuroligist who did blood work,mri,spinal tap and said he has CIDP or chronic GB.Well a month ago he had a seizure.This did not fit with his diagnoses.He did not know what to do.Cat scan and mri of brain came back neg.So now we are going to JohnsHopkins on Aug.11.I feel like he is dying in front of my eyes.Not many people have heard of this.I think it had to do with the shots or he picked up somethig in katriina.Does any else know of anyone who came back with problems after the hurricane??Thank you in advance for letting me vent.

    • Anonymous
      July 30, 2008 at 12:14 am

      Scott, welcome to our family. There is tonnes of information in the forums and each of us has experiences and info that we are willing to share. Ask away and someone will answer. We also have things we do for fun that takes our minds off of our illness. Visit us over at the Tavern or go to The Lighter Side. Lots to learn and do here!

    • Anonymous
      July 30, 2008 at 1:29 pm

      My family has to take alot off of me it has effected me mentally because i was out going never stopped , my wife has stuck by my side and raised me and our four kids but things between us are getting bad. And on top of it all we were only married a yr just had a baby that was 3 mths old when I come down with GBS, she raised in the hospitals with us, and the 3 boys 7,8,9 yr olds that don’t understand , this has put a major dent on our family and relationship, Is there any suggestions to help.

      Scott

    • Anonymous
      July 30, 2008 at 1:52 pm

      Scott, GBS is as hard on our caregivers as it is for us. The more education people have around GBS, the easier it is to be supportive. By coming here you are educating yourself. I would suggest you encourage your wife and family to visit here as well. There is a forum specifically for caregivers and family. The folks there share the hardships and joys of caregiving. There are no easy answers. Your wife may just need someone she can share her fears with, anxieties and frustrations as well.

      There is also the option of counselling, both individually and as a couple/family. It sometimes help if you are in a place where it is safe to just let go and vent. There are good people out there who can help you work through this process.

      I wish you and your family good luck and hang in there. As some of us say…Keep on keeping on!

    • July 30, 2008 at 2:15 pm

      Scott.
      I would highly recommend you start the process of finding a Neuro-muscular Specialist to work with your Neurologist. It can take quite a while to get an appointment with a NM specialist, so start soon!
      If your GBS / CIDP drags on your going to be under the gun to see one of these specialist and that can really be frustrating.
      Your whole family is in for a tussle while you battle this debilitating disease. Can you recruit friends/family to help, then point them to helping your wife and kids to help relieve the pressure? I know everyone keeps telling me “if there is anything I can do”. Well I don’t have young children, but if I did I would be trying to relieve my wife’s duties by calling in all the favors I could.

      Best of luck, and think about getting a specialist sooner rather than later, it can take many months to get an appointment.

    • Anonymous
      July 30, 2008 at 4:30 pm

      Scott LindaH posted a very informative thread on this subject of marriage and a sickly spouse. She may respond as well but thought I’d copy and paste her advice for you.
      Best wishes to you!
      Denise
      *************

      Marriage and being sickly! Thought this would be helpful

      ——————————————————————————–

      I just saw a posting and thought this would be helpful in regards to our marriage if some of us do have a spouse in our lives while being sick. A good majority of us when we first met our spouses were pretty much so on the healthy side. Neither of us knew our futures or fate. We had fun together and shared our lives together and we talked.
      Many of us know our first year of marriage is usually the best year still in honeymoon phase. Then as the years go by we become one and tend to forget what we had in the beginning.
      I married my husband 19 years ago and we got along great. Several months after the marriage, I became ill. It took 5 years for them to say I had Systemic Lupus.My husband was there for me many times over. But I never realized that he too needed me for effection.
      I did not realize how bad I had gotten until we separated a good year away from each other and when I saw myself, I saw I too had my own faults.
      I got sick with Lupus, and every person, that I would talk to it was about me and my Lupus. My husband would come home from work and ask me how my day was, and I would start talking about how bad I felt. My legs hurt, my arms hurt, I can’t drive anymore. I can’t do this or can’t do that. Not once did I ask him how his day was. Me being at home all the time, I had nothing else to talk about. So Lupus became my life! And now I have Lupus and unknown CIDP.
      Being away from him and being with my mother a year. You don’t even want to hear about my mother! LOL! I guess that is what made me see what I was like! Anyway! I saw myself in a different light. I realized that while me being sick, I almost expected him to understand, but he did not understand.
      Not only was I missing my life now, but my husband was missing his wife.
      I needed attention but then he needed it too and was not getting it!
      For those that feel marital stress. Please sit back and take a look at what you were like before you got sick. That person is still there but is now sick! Your spouse is going through a grieving process at the same time. Not knowing what to do and not knowing what to expect and they see our personalities change.
      So when my husband comes home now from work. I ask him how his day was. I never bring my illness up to him unless I need urgent medical attention. I don’t even talk about it to him. I talk about our cats, or my mom called. No illness mentioned. I tell him how much I love him and try my best to be his wife. He know’s I’m sick but still needs to know he is cared for himself.
      Some of us right now can’t use our hands or walk and some can but hard using. A special dinner even if it’s a Pizza Call and a Candle burning at the table with the dim lights. Really means alot to that spouse.
      Keep your marriage working by talking and not arguing. And remember that your spouse is also hurting deeply because you are sick and there is nothing they can do. Assure them that you are okay!
      As your illness progresses or get’s better, the relationship you had will gain strength by working together. But you have to remember to include him in your illness but also give him or her those special needs. I hope this helps!
      I have seen many marriages spilt up after a person get’s ill. And after experiencing what I did, I saw a light at the end of that tunnel and it helped me change my ways!
      LindaH

    • Anonymous
      July 30, 2008 at 5:56 pm

      Please tell me what a neuro-muscular spealist, what do they do, I am very interested.

    • Anonymous
      July 31, 2008 at 9:28 am

      Scott,

      Welcome to the community.

      I read that you are only a year older than I am, so we have age in common. I have had GBS twice, 13 year apart.

      The first time, I was 19 years old and ready to tackle the world. I recovered from that and never thought about GBS again, until January 2007…then it hit again.

      My wife (of 11 years) and I have two kids, ages 4 and 1. She was pregnant when I felt symptoms of GBS this time.

      Just wanting to welcome you, and state that you can get through this. Talk with your wife. Keep her informed of all your ailments, but listen to her as well. I’ve related before that when I got home, I thought it was about me getting better. Then I woke up and realized that my wife was taking care of a 2 and a half year old, while 7 months pregnant, AND caring for a husband who just came home from the hospital.

      Hang in there, and take care of yourself. Things will come back, and your hands will too. It just takes longer on some things than others.

      PM me anytime, if you have any questions.

      Be safe.

    • Anonymous
      July 31, 2008 at 9:40 am

      Good advice Brett!

    • Anonymous
      July 31, 2008 at 10:22 am

      [QUOTE]
      04-19-2007, 11:23 AM
      [URL=”http://www.gbs-cidp.org/forums/member.php?u=23″%5Dali%5B/URL%5D [IMG]http://www.gbs-cidp.org/forums/images/statusicon/user_invisible.gif[/IMG] vbmenu_register(“postmenu_33720”, true);
      Senior Member
      Join Date: May 2006
      Location: Manassas, N.Virginia
      Posts: 1,813

      [IMG]http://www.gbs-cidp.org/forums/images/icons/icon4.gif[/IMG] [B]Support Needed for Patients[/B]
      The subject of support, or in many cases, lack thereof, from friends and family keeps coming up time and time again. The Foundation is here to offer guidance, education and support for patients and families, especially during those initial stages of our illensses, and obviously through chapters or liaisons this support is ongoing. However, that being said, long term support and understanding is often not something that families and friends are able to give and understand.

      The more I speak with patients on the road to recovery, or for that matter, ‘recovered’ but suffering from residuals, the more I am saddened to hear how people are suffering because of no understanding or support from their immediate families. I too have been a victim of this, and everytime I think they ‘get it’, I am in a sense shattered by somethings that are said and done which makes it plain that they just dont.

      I see families breaking apart, both sides suffering great depression, angst and anger. Its unfortunately not as easy as printing out articles written by doc’s or from the forum for others to read, and often the families glance thought those vital books that are sent by the Foundation. Once off a respirator, or no longer paralyzed anymore, it is very difficult for someone to understand that a case of ‘mind over matter’, isnt going to help at all. I know that I unfortunately wouldnt understand if I didnt have the residuals that I have today, and its sad for me to realize that. Often anything that is done to try and explain what is happening by the patient is percieved to be trying to justify them being lazy, or self pity or whatever else the case is.

      The reason for me writing this is that, over the past few days, I feel such a strong urge to TRY (and try is the operative word here) and do something, ANYTHING, to help our GBS/SIDP family who are having this family support problem – I cant bare to hear that families are being torn apart because of this. Does anyone have any ideas?? Does anyone feel that having only family members (and not the patient), brought together in a friendly, happy environment to discuss and educate, would be beneficial?
      All I am doing is getting ‘feeling’ for what, if anything, could possibly be done in the futre.
      __________________
      [/QUOTE]

      Scott,

      I just wanted to let you know that you are not alone! I desperately would love to do something to help families going through this termoil as I speak to people every day that need so much help. If I had the energy I would love to form a non profit to try and address this in some way, even though I know it wouldnt even scratch the surface.

      I have been meaning to ask if you get the foundations newsletters qaurterly? they do have a wealth of information, and often help answer some questions.

      This is a link to the thread that I posted above, called “support needed for patients. You may find it helpful to go through the link as it often helps to know that you are not alone in these struggles.

      [URL=”http://www.gbs-cidp.org/forums/showthread.php?t=2348&highlight=family+support”%5D%5Bhtml%5D
      gbs-cidp.org/forums/showthread.php?t=2348&highlight=family+support
      [/html][/URL]

    • Anonymous
      August 7, 2008 at 4:41 pm

      Scott,
      How are you now? I see your diag. was Sept. 2007, mine was April 2007 and I still can’t walk without a rollator. I can’t drive and I am totally dependent upon my family. Fortunently my children are grown and my oldest daughter is an RN also. The hardest thing or me is I am used to being the care giver not the recepient of care and this drives me crazy.
      Hang in there things have to get better.
      Cathy:)

new to GBS

    • Anonymous
      September 18, 2007 at 6:44 pm

      I’m looking for any help I can get. My father-in-law was diagnosed 3 & 1/2 weeks ago with GBS. He was playing golf one day and completely paralyzed the next day. It seems the symptoms have stabilized. He can only move his right arm in an up and down motion (from the elbow down). From the beginning he has always been what they call an “atypical case”. He has all the physical symptoms of GBS, but his tests always come back inconclusive. At the beginning of this week we were told he had the axonal form of GBS and he was given a very grim prognosis of a 5% chance of walking. After only 6 days in rehabilation and only 3 weeks into the disease (which if I understand it correctly sometimes doesn’t stabilize for 4 weeks) I thought that was a premature prognosis. What’s even more upsetting the dr said he had a 50% chance of never improving beyond his current condition. We are talking about a guy who is 65 years old, but looks and acts more like someone in his 40’s. This disease has completely knocked us out. He was just transferred to Ohio State University Medical Center. He has a PT and OT that work with him, but are there things we should be doing to help with his recovery? Any additional info, tips, suggestions we could get would be helpful. We just want to make sure we are doing whatever we can to help him with his recovery. Knowing him and his determination, if there’s a 5% chance he’ll be one of them. We’re all determined that he will make a recovery. Thanks for being here.
      Christie

    • Anonymous
      September 18, 2007 at 10:18 pm

      hi christie & welcome,

      pls see my reply on your other post. it’s best to avoid duplicate posts where possible. thx. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      September 19, 2007 at 1:01 pm

      Christie,

      Welcome and so sorry to hear about your father-in-law. If you contact the foundation 610-667-0131, they will put you in touch with your local GBS Liasion. I believe that yours would be Kassandra Ulrich who is also the Regional Rep. She would be happy to help in any way that she can. If for some reason you cannot contact her or if there is anything I can do, feel free to email me anytime jerimyschilz at hotmail dot com. Take care and you are all in my thoughts and prayers.

      Jerimy Schilz

new to GBS.

    • Anonymous
      November 17, 2006 at 2:26 pm

      It took a lot of googling but I finally found a support group!

      I was just diagnosed last week and spent 8 days in the hospital. I was just released yesterday. Two and a half days spent in ICU and then rest in a step down unit I am glad to be home. Plus I have a three year old and it was killing me not to see him!

      I’m new to all of this. I had Chronic Lyme Disease when I was younger but since I was 15 my levels have tested low and I don’t have any signs or symptoms. The GBS seemed to come out of no where. They are not sure what caused it, but did lots of blood work to find out.

      I’m a social worker by day (bartender by night) and my doctor had suggested that anything from cockroaches or mice droppings in my clients homes could have caused this. Do you think thats a possibility? I love my job and want to return to work as soon as I can (not to mention my job will be replacing me in 4.5 weeks if I don’t return!)… But if the trigger could be that what can I do? I can’t risk this all over again.

      My other question is how common are relapses? I’m only 23 and I’m totally freaked out by the fact I could have to worry the rest of my life about relapsing…

      Thanks!

    • Anonymous
      November 17, 2006 at 4:19 pm

      Greetings Jenni!

      Welcome and I am so glad you found us – it will be worth the effort. I am not the most knowledgeable of this group, just very chatty so I will share what I think might help.

      Most of the time, the cause is unknown although flu shots are a real common cause or a gastro. infection. Hopefully you are young enough to pop up and out of this, but to be realistic be prepared for a possible change in your life. It is just may be time to ‘slow down and smell the roses’. But don’t be scared, you have just joined a large and wonderful family. When you have questions, get frustrated and need to vent, or whatever – we are here for you!

      IMO, you may have to do with just one of your jobs. If you choose the social worker and are worried about cleanliness, you will be able to take appropriate precautions. Others here can give you advice about relaspes, but I think you don’t need to worry about that at all.

      Get some rest, and by the way, rest some more and check in with us often!

    • Anonymous
      November 17, 2006 at 7:03 pm

      Jenni,

      I think a great percentage of us dont know how we got GBS. As Chrissy said …. flu shot, gastro infection, animal feaces or bird (as you said) and the list goes on ….. Just as Chrissy said, you really do need to rest as your body does take a long time to heal, and fatigue may play a prominent role for a long time to come.
      Relapse is rare, they say it could be around 3% of those who have had it before. However, we have to be realistic here, and there are those who do relaspe, and one of our forum members has a type of relapsing/remitting kind, but that is the exception.

    • Anonymous
      November 17, 2006 at 7:59 pm

      Welcome Jenni, glad you found us.

      Jerimy

    • Anonymous
      November 17, 2006 at 10:00 pm

      The change in my life is what worries me. I’m a single parent who busts her ass working two jobs to make ends meet. I also like to live my life too outside of being a parent, if you know what I mean. Right now knowing I might not be able to go back to work really worries me. As of now my full time job will replace me if I am not back to work in 4 weeks. My part time job (which is where the money is) will always be there but its physically exhausting even when I am well (i’m a bartender). Know I might not be able to put in the time at work (60+ hours a week) and with my kid (right now I am not able to sit on the floor or do all the mommy kind of things, like give him a bath, go outside and play) is really depressing me. My bills can’t go unpaid and my child needs me. I’m at a loss for what to do and I know realistically my family and friends won’t understand why I’m stressing. Everyone keeps telling me to relax and focus on getting better but instead I’m stressing over what life will be like when I can resume it. Is that normal?

    • Anonymous
      November 17, 2006 at 11:41 pm

      hi jenni & welcome,

      if you don’t rest & stay stress free when your body is tired you will take much longer to recover & may recover less. read the threads on this board. no one knows how long it will take you. your call. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 19, 2006 at 9:58 pm

      This is my second post. I’m new to this forum too. I have had GBS for over a year now. In this time I have had to learn like everyone here that slowing down is the first step after testing. Stress and worry won’t help and yet it’s hard not to do. True the bills and family need our attention but think of it as a time out period. Make a Ben Franklin list. On one side write down all the things you can re-arrange and on the other side a list of those you can’t change. Check your community and churches for help. You might be surprised at the kindness of people. File for SSI right away and keep copies of all your test results and medical records. It takes along time to process about 5 months but it seems like forever. During the 5 months of waiting try to get help through your state and food shelves. Keep in touch here for all the support and help we can all give you. Love, Peeps

    • Anonymous
      November 24, 2006 at 8:05 pm

      Hello all,
      Please do not open the door to the GBS disease. It is just a step in you life, focus. This will not kill you and will not get back. Listen….

      If you listen this time, it will make a difference in your life. Just learn the lesson and get back to life, change the things you only know you should change. GBS was just a call for hardhead like me and you, but just repent and go on with your life, it will never happen again.

      Do not believe any more lies.

      Love you.

      GBS was the most terrible thing that happened to me. I got the disease in April 9, 2006, the day before I was in my bicycle with my family, next day I could not even stand up, I could not believe it, I was due to go to Italy next day, thanks God it happened before my trip. Anyway, it was horroble. sorry for my english, but I am a Mexican and at that time I was living in Krakow Poland for my work, I had been living there for 3 years, as an expat, life is easy and you enjoy the best, but when I was due to go to an appointment for my next assignment, thats when it happened. We were having family visit in Poland, I was riding my bike and discovering new trails, and suddenling next day I could not stand, at the begining I tought it was just pain, because I was trying new trails, but later in 6 hours, I could not move, the ambulance needed to go to my home and at the hospital I was diagnosed GBS. When I was at the hospital the company I am working for, send me some information related to the disease. I just put them in the drawer, I said, If there is someone that will help me that will be God. Next morning to my very much surprise I could not even move, but my right hand and only rested in the chest. Then I realized that if this was the case, it was for a reason. God loves to be praised, I was going to learn that. So there I was, the scariest thing came later in the day, when they needed to open up my neck and stick a device to change my plasma. I was so afraid, that when I was at the operating room, I did not know how to handle it. So I remembered a passage in the bible “revelations” that describes the face of Yeshua (Jesus) like a bright sun, I concentrated myself on that, I suddenly evevrithg was finished, no pain and nothing. We called on the phone a believers friends to ask them to pray for me, the first night I caught developed in me. I could not cought, my nerves did not responded, the doctors just watched and told us to be alert and call them if more complication arised. Just as a note, the Polish hospitals installations, not equipment are well 30 years old, but the attention of the doctors and nurses if first class in the world, but you believe what you see, and it was scary. Anyhow a I started my plasma treatment, by the 3rd day there was a holiday in Poland and doctor where taking the weekend off. I told the doctor, that by the time he will return, he will see great changes in me. Aside he told me, that he admired my positiviness , but that I should not be very enthusiastic. Anyhow we proved him wrong, thaks God, on Monday I was walking, going up and down the stairs of the hospital without assistance. All the staff was surprised. In 18 days I was out of the hospital and due to Copenhagen for a Benny Hinn crusade, we stopped in Berlin for sightseen, which to tell you the truth I was not able to walk for a long period, as the same as the first two days in Copenhagen, but later we traveled for a Jewish Machol dance seminar in Hungary, where I danced my body off. It so good to be able to move without assistance and supervision.

      I thanks God, the hospital staff and my family for all the support.

      How do I think everthing started:
      1. Living in a foreing country, but I have lived there already for 3 years.
      2. I was eating KFC (Kentucky Fried Chicken) every weekend, by the way my family always told me It seemed to be undercooked, which I never believed.
      3. Poor diet
      4. Believing that you own your life

      After the fact, I waked up for at least 3 month feeling my arms weak.

      I moved to Italy, I changed my diet, here there is no KFC, but anyway I do not eat pasta and pizza but just once per week.
      I have joined a swimming class twice per week
      and my post symptoms completly disapeared.

      So my recommendations are:

      If you are or have been thru GBS:

      First focus in God, there is no one else that can help you.
      2. after the plasma treatment, you will feel much, much better, every time you go.
      3. do not be affraid to go back to your normal life, we are no supposed to be in be and without moving, it takes time, but focus, and you will do it, there is no pain, just walk, run , dance, etc.
      4. change your diet, I think that the secret is there, do not eat fat, high proteins like pork.
      5. Change your habits, life is one, and should be wonderful
      6. Love GOD for the new opportunity he just gave to you.

      My life has changed so much, that I will never go back to were I was, I have learned my lesson, and God has been good. Why did it happened, probably because He loves us so much, that some of us, have a hard head and require an special treatment.

      Anyway, I hope you the best if you are going thru GBS or you have been. I count myself as a pride winner. but I could not done it myself without God, do not give up. Focus, He is always waiting to be called, no matter what you have done in the past. If He did it for me the lowest of all, you should expect the best for you.

      Love you. Hope that my story helps you, to stay strong and believing, He will just do it for you.

      Aftermath. I am living now in Italy for a period of 3 years. I am better fit than before, stronger, and happier. I am do to go to my home country in 7 days and tell everuybody what happened to me.

      I bless you all: Yevarejeja Adonay veichmereja, Adonay Pana veleja vicuneja, Isa Adonay pana veleja veya sem leja Shalom.

      Just a powerful Jewish blessing.

      Ciao. I you want to contact me feel free.

      Shalom

    • Anonymous
      November 25, 2006 at 9:44 am

      Hi Jenni,

      Welcome to the forum. It will help you connect and hopefully answer some of your questions. We have all lived through it in one way or another. If you had an upper respiratory infection, that could be how you contracted GBS. In my case, I had a sore throat that hung around for about three weeks. I was training for my 25th marathon. Went from running 15 miles on a Thursday to nothing on Sunday. Oh, and one year later, I did finish that marathon, so hang in there.
      The most important things I have learned form this forum are, how important getting enough rest is, no matter how bad it is, there are those that are worse, and here you have friends that understand.

      Good luck, and slow down.
      VMac

    • Anonymous
      November 25, 2006 at 3:08 pm

      hi thanksgod, i’m glad you are doing better. keep up the good work. i do have to tell you, your information on gbs isn’t totally true, one can die from gbs and one can get gbs again, there is no immunity to gbs for anyone. and as for pain-alot of people have severe pain with gbs, and there are residuals after for many as well. take care.

    • Anonymous
      November 26, 2006 at 1:20 am

      [QUOTE=jenni]It took a lot of googling but I finally found a support group!

      I was just diagnosed last week and spent 8 days in the hospital. I was just released yesterday. Two and a half days spent in ICU and then rest in a step down unit I am glad to be home. Plus I have a three year old and it was killing me not to see him!

      I’m new to all of this. I had Chronic Lyme Disease when I was younger but since I was 15 my levels have tested low and I don’t have any signs or symptoms. The GBS seemed to come out of no where. They are not sure what caused it, but did lots of blood work to find out.

      I’m a social worker by day (bartender by night) and my doctor had suggested that anything from cockroaches or mice droppings in my clients homes could have caused this. Do you think thats a possibility? I love my job and want to return to work as soon as I can (not to mention my job will be replacing me in 4.5 weeks if I don’t return!)… But if the trigger could be that what can I do? I can’t risk this all over again.

      My other question is how common are relapses? I’m only 23 and I’m totally freaked out by the fact I could have to worry the rest of my life about relapsing…

      Thanks![/QUOTE]
      You are very lucky to have been in the hospital only 8 days!!! Be very thankfull, with this disease I was in the hospital 3 months and most people-longer! Are you sure you had GBS? Don’t worry about a relapse, just take one day at a time. How did the Dr.’s determine you had GSB anyway?? Take care of yourself. Its been 12 years since I’ve had this and still feel fatigue.:) 🙂 God Bless!!

    • Anonymous
      November 27, 2006 at 5:10 pm

      After reading many of the post, I think I am very blessed, but it is not only me, it is offered to everybody but we need to have faith. I got in the hospital April 9 and I was dancing on May 9. During the first week I got to a point where I could not even stand on my feet. I needed my brother to take to the bathroom and help me do all my phisiological needs. After reading all these posting I guess I have not been thankful enough, but for sure this is helping me to be. Everyday I feel better and better, compare to where I was even before GBS, this means I am more flexible and joyfull. I have a very sedentary work, I am always at meeting and phone calls, but since two months ago, I enjoy walking daily 45 minutes, God knows where I found the time to do it, if before I did not have the time, I have joined a bi-weekly swimming class and the things just get better and better. I have also learned to pray and stay in contact with GOD, perhaps this is the most difficult part, but I am trying. But let me tell you, this is not about one specific person , this can happen to everybody, God has no record of your wrongs, he blesses everybody, but you just need to believe that he will bless you and deliver you from sickness. Believing means, going to the water without a safeguard, just trusting and sooner or later your deliverance will come, sometime it takes more time, but it comes.

      Please keep believing, do not give up, there is nothing stronger than him, not even GBS.

      GOD bless you.

new to GBS

    • Anonymous
      June 23, 2006 at 7:56 am

      My husband was just diagnosed with GBS. He is mild compared to reading some of the stories on this forum. He only has numb fingers, toes, and legs, with weakness throughout those areas. He has not been treated with anything, and everyone just says, it takes time. He cannot drive or walk steps easily, and is starting physical therapy next week. Does anyone know of alternative treatments that might help like, accupuncture, massage, vitamins, hot bath, any other supplements? So, far he hasn’t gotten worse from the initial onset. Thanks for any information about how to get feeling back.

    • Anonymous
      June 23, 2006 at 12:00 pm

      Hi dhj,

      Welcome to the forums.

      No matter how mild a case of GBS, your husband still needs to have IVIG or plasmapheresis to stop the nerves from being damaged any further. Most Drs have never had a patient with GBS and don’t realize they need treatments. There is no cure for GBS only treatments and medications for any pain.

      GBS stands for “Get Better Slowly”, it’s an illness that cannot be rushed to healing. When nerves are damaged it takes a while for the healing to begin. He could have a fast recovery or a slow recovery which seems to be the norm. He needs to rest and sleep as much as he can too.

      When was he diagnosed, a week, a few days, a few months? If it’s only a few days or a few weeks then he might not be done progressing yet. Keep an eye on him for any breathing problems, GBS can move rather quickly and can affect his breathing, if that happens get him to the ER ASAP.

      Wishing your husband the best. 🙂

    • Anonymous
      June 24, 2006 at 9:05 pm

      [FONT=”Fixedsys”]I am also new here I am now & have been for the past 5 1/2 yrs a careprovider for my wife. Who was left totally disabled by GBS in June 2000[/B][/FONT] 🙂

    • Anonymous
      June 26, 2006 at 1:58 pm

      Welcome to the forums Dustdemon,

      I too was a caregiver for 6 years to my husband Frank. I am glad you are one of the spouses who has given your all to your wife. Many people walk away from the ones they love, they seem like they can’t handle any illness.

      Bravo to you.:)

    • Anonymous
      June 30, 2006 at 2:19 pm

      [B]My wife was diagnosed & came down with GBS in June 2000, she had a diseased gall bladder. As to which she had surgery to remove it, a few days after the surgery, is when the problems with the GBS set in. Shortly after the diagnosis, it totally shut her respiratory system down. She died & some way or another the Drs at a hospital in Louisville Ky were able to bring her back. She was totally paralyzed from the onset of it, she spent 3 mnths in the hospital, & had plasma pherisis 5 times, plus ivig. She went from the hospital to a rehab center, where she had to learn to do everything all over again. They got her back to where she could walk with the help of a walker as to which she has to still use this. The Drs said she would never get back to even 1/2 being normal because of the extent of damage done by the GBS. She also had to have surgery in 2004 because of an extreme colitis infection that had set up in her colin, the damage was extreme it resulted in surgery that the Dr had to remove 95% of her colin. She has an illiostomy & has to wear a pouch on her lower right abdomen. She is not able to change the pouch due to still having limited use of her hands, this is one of the things I take care of. It can be a challenge but I’ve learned to deal with it, she also has a gtube in her stomach. As to which I crush all her meds & disolve in water, & put them through this tube. She has chronic nerve pain & she is on 800 mg of generic neurontin 3x /day, along with Hydrocodone 7.5 500mg 3 x/day. We will be married 29 yrs this Nov, we have 2 daughters & a son all grown, I have 2 grandaughters & a grandson as to which his mommy has another baby due in Oct. This ones a girl you know these grandbabies, are what are giving my wife the extra push to keep going. Well I just thought I share this with you. Something that put a problem on me was that last yr the car I was driving was rear ended & I’ve been left with back problems. So that just adds more to everything else, oh my wife was 40 when she was hit by the GBS, she’s now soon to be 47. As you know being a careprovider is a lot of responsibility, I just take it one day at a time. 😉 [/B]

    • Anonymous
      June 30, 2006 at 2:56 pm

      God bless all the caregivers. There are no words adequate enough to say how much we love and respect you.

      Marge, GBS 12/98

    • Anonymous
      June 30, 2006 at 9:31 pm

      Dustdemon,

      God bless you for taking good care of your wife. I hope your back will be better soon.

    • Anonymous
      June 30, 2006 at 9:40 pm

      [FONT=”Century Gothic”]I love my wife very much, I have been told by a lot of people they have the strongest admiration for me, because of my devotion to taking care of her. Maybe this is what being married to someone for 28.5 yrs does.[/FONT]

    • Anonymous
      July 11, 2006 at 5:23 pm

      dhj travel,

      Your husband needs to be treated. He must go to a university hospital. Not all neurologist know how to treat GBS or the chronic form CIDP. Which he may have. I had the same symptoms develope that your husband has last July. I have seen a total of 4 neurologist since the symptoms started. The 1st thought it was GBS but wasn’t going to treat it until I couldn’t walk at all. (I had run a 1/2 marathon in Alaska 2 weeks before the symptoms start and I had spent 2 wks. hiking around Alaska) At that time I was having a difficult time going up stairs I saw the 2nd neurologist twice she did some test and referred me to a 3rd neurologist that she felt I needed to see immediately, his expertise is in neuromuscular diseases. He diaginosed me with GBS and treated me with IVIG immediately. Approx. 35 days after treatment I developed the symptoms again and was treated again then 35 days or so after tx. I developed the same symptoms. He at that time dx. me with a chronic form of GBS which is Chronic Inflammatory Demylenating Polyradiculoneupathy. I saw a 4th neurologist at an university hospital and the dx. was the same. The treatment slightly different which I like so I stayed with him and my strength is almost normal I am back to work but I must get IVIG every 28 days and take some other medication. So at least a 2nd opion is necessary.

      Good Luck to you,
      Pam K

    • Anonymous
      July 30, 2006 at 12:35 am

      When dealing with a potentially serious medical condition, it’s usually best to get a second, and sometimes a third opinion.

    • Anonymous
      August 14, 2006 at 7:21 pm

      Dear DHJ,

      I disagree with any assertion that one must have ivig treatment in order to improve, there are alternatives that work.
      In my case, my neurologist would not administer the ivig until hearing back from my insurance company, to know for certain that they would pay for it. This took two full months! I didn’t know at the time that it would take that long, but I felt worse every day and my patience for waiting between tests, for phone calls, for insurance companies was at an end. So in the meantime, I started a yoga class, and I visited a homeopathic doctor. I was interested in Homeopathic because it is natural medicine, uninvasive, and I am not interested in a cure that can potentially do harm to my body.
      Know up front that homeopathic medicine is not recognized by the insurance companies as medical treatment!
      But, ten days after my first remedy, I felt improvement, and felt noticeable improvement every day. By the time the insurance company notified me that they would cover the treatment, I didn’t need it.
      Yoga was a big part of my recovery as well, and I knew from the first class that it was right for me, because during that class I could feel my toes again for the first time in months! If you choose to try a yoga class, which I highly recommend, choose Hatha yoga because it is the most gentle type of yoga.
      It doesn’t take much time or investment to try an alternative method, and it’s in your interest to do so. So I encourage you, urge you, to look at alternatives, shop it and research it but do not sit there and wait for the neurologist to tell you what to do.
      I also tried chiropractic, before I was diagnosed with GBS, and it was useless to me. I have not tried accupuncture.

      Hope this of some help to you and I wish your husband a speedy and full recovery!

      Kelly

    • Anonymous
      August 17, 2006 at 3:13 pm

      My husband was diagnosed with CIDP on 23Jun06 after being told by 3 other neurologists that he had ALS and would die in 2-5 years.

      We sold our home, boat and everything we had at the lake to move in closer to our son. What a blessed day when the neurologist in San Antonio told us he had CIDP. Now I know CIDP is not going to be a picnic, but after being told you have ALS by 3 neuro’s, this was a prayer answered from GOD.

      He had his first IVIg infusions on 19Jul06 and we go back to San Antonio on monday, 21Aug06 to start another round. I can’t see any great deal of improvement from the IVIg, however his dr. said since he went so long without anykind of treatment it may take the 2nd or 3rd round to see some results.

      I read all the blogs from people who have CIDP and some complain about what it has done to them. I want to be the first to tell them, don’t complain about CIDP, it could be worse such as ALS. Thank GOD and all the prayers that were sent our way to get the diagnosis of CIDP

    • Anonymous
      August 17, 2006 at 4:00 pm

      [QUOTE=dustdemon 1][B]My wife was diagnosed & came down with GBS in June 2000, she had a diseased gall bladder. As to which she had surgery to remove it, a few days after the surgery, is when the problems with the GBS set in. Shortly after the diagnosis, it totally shut her respiratory system down. She died & some way or another the Drs at a hospital in Louisville Ky were able to bring her back. She was totally paralyzed from the onset of it, she spent 3 mnths in the hospital, & had plasma pherisis 5 times, plus ivig. She went from the hospital to a rehab center, where she had to learn to do everything all over again. They got her back to where she could walk with the help of a walker as to which she has to still use this. The Drs said she would never get back to even 1/2 being normal because of the extent of damage done by the GBS. She also had to have surgery in 2004 because of an extreme colitis infection that had set up in her colin, the damage was extreme it resulted in surgery that the Dr had to remove 95% of her colin. She has an illiostomy & has to wear a pouch on her lower right abdomen. She is not able to change the pouch due to still having limited use of her hands, this is one of the things I take care of. It can be a challenge but I’ve learned to deal with it, she also has a gtube in her stomach. As to which I crush all her meds & disolve in water, & put them through this tube. She has chronic nerve pain & she is on 800 mg of generic neurontin 3x /day, along with Hydrocodone 7.5 500mg 3 x/day. We will be married 29 yrs this Nov, we have 2 daughters & a son all grown, I have 2 grandaughters & a grandson as to which his mommy has another baby due in Oct. This ones a girl you know these grandbabies, are what are giving my wife the extra push to keep going. Well I just thought I share this with you. Something that put a problem on me was that last yr the car I was driving was rear ended & I’ve been left with back problems. So that just adds more to everything else, oh my wife was 40 when she was hit by the GBS, she’s now soon to be 47. As you know being a careprovider is a lot of responsibility, I just take it one day at a time. 😉 [/B][/QUOTE] Dust Demon, you are the man. Well done, people like you are what we need

    • Anonymous
      August 17, 2006 at 4:02 pm

      Hi Boggl, Welcome to the site. Glad you found us. What a blessing that your husband doesn’t have ALS! It’s true, the sooner treatment is started the better. I had symptoms for many years and only went to a neuro because it had gotten to where I could hardly walk, etc. Not real smart on my part but I didn’t want to give up my beloved nursing career. I’ve been on IVIG now for a year with minimal improvement, but like you said it could be much worse. Everyone is different in how the IVIG affects them. Some are on other drugs because of no affect. I know at least this isn’t fatal. We share our experiences, symptoms and problems with activities of daily living with each other here because we understand and are able to be a support to each other. I hope you and your husband are able to find support and answers to any questions you might have on this site. Take care, Vicki

    • Anonymous
      August 17, 2006 at 4:39 pm

      I was mis diagnosed 3 times, so yes 2nd 3rd and 4th opinions are crucial. It is so rare it is often overlooked.

    • Anonymous
      August 18, 2006 at 10:13 am

      BOGGSL,

      Wow! Doesn’t that put things in perspective. I’m so happy for you and your husband that the ALS diagnosis was wrong.

      I know a little of how you feel about that, because for about 2 weeks, one of my neurologists was convinced that I had Myesthenia Gravis (also fatal and very nasty). In fact, most of the things I was being tested for were very bad and permanent and/or fatal.

      What a relief to “only” have GBS. Somehow this made it more tolerable to hear the bad news and go through the recovery and residuals, knowing how much worse it COULD have been.

    • Anonymous
      August 24, 2006 at 9:50 am

      I am very glad that I was ignorant of GBS until after leaving the hospital. I have the greatest amount of sympathy, and respect, for those that have battled through tough cases. My wife, a physician, was on vacation when I contracted GBS, and I went through my horse-pistol time without knowing the potential havoc that GBS can wreak. The Caregivers to GBS patients really deserve a huge thanks. I went from running 5 miles on Monday morning and installing a new kitchen floor during the day, to not being able to walk by Monday night. How can you explain that to a friend or loved one? I am convinced that the only people who really understand and can support you must love you more than you can imagine.

      Hang in there … there is strength in numbers (even small groups of them).

    • Anonymous
      October 24, 2006 at 1:05 pm

      I’m all for alternative medicine and natural healing, however GBS can progress rapidly and is a serious condition that can require hospitalization. Often when we get ill, insurance is the first thing that comes to mind. I suffered from GBS in 1972 at the age of seven. My family had no health insurance at the time. One day, I was running around playing with my neighbors and by the next evening I was paralized from the neck down and on a ventilator with double vision. My family is so thankful that when other hospiatls rejected me due to no insurance, St. Mary’s in Huntington W.Va put my life above all else. I was hospitalized over a month and spent many months in therapy, learning to walk again. In 1972 GBS was extremely rare and I was of three children who were struggling to survive, after one child passed away, that child’s doctor flew from Mexico to assit with me and a boy in Florida. We survived because of him, he fought as hard as we did and used his own money and time to get me on the latest respirator at that time.

      As much faith as you want to have in natural healing at all, you have to have faith in the medical community. They may know something you don’t, it would be in the best interest to look into every avenue and not just one.

      By the way, I have never looked at that time in my life as a negative. It made me a better person, a stronger person. My family will tell you it did the same for them.

    • Anonymous
      October 24, 2006 at 6:31 pm

      Very good advice Tracy, welcome to the forum 🙂

    • Anonymous
      December 29, 2006 at 10:41 am

      [QUOTE=dhj travel]My husband was just diagnosed with GBS. He is mild compared to reading some of the stories on this forum. He only has numb fingers, toes, and legs, with weakness throughout those areas. He has not been treated with anything, and everyone just says, it takes time. He cannot drive or walk steps easily, and is starting physical therapy next week. Does anyone know of alternative treatments that might help like, accupuncture, massage, vitamins, hot bath, any other supplements? So, far he hasn’t gotten worse from the initial onset. Thanks for any information about how to get feeling back.[/QUOTE]
      Hi:
      I was treated for gbs on april 21, 06 and spent the 7 days in the hosp. I did not get on the vent. I went home for a week of therapy and then did pool therapy for the next 7 months. I still have problems with foot and leg pain and lots of fatigue. I have tried lots of different things to try to get better but now realize I cannot speed up the recovery!
      The reason I am telling you this is I have found a thing that gives me relief for my foot pain. Its called Icy-hot extra strength. I use rubber gloves to put it on twice each day. Morning and before bed and I wear socks on my feet for sleeping. It sure has helped my foot pain and I wanted to share this with you. I still take 2700 mgs per day of neurotin 3 times per day also. I can walk some now and mornings are okay but by night fall, I have no energy. Best wishes for recovery, but remember it takes a long time but it does slowly come. For me it will be a year in april of 07. Happy new year.

    • Anonymous
      February 20, 2007 at 7:40 pm

      I know what it is like I went through the same thing I get a IVIG treatment every 3 weeks.

    • Anonymous
      February 21, 2007 at 9:53 am

      Hello all,
      I am new here, too. I found you because of the story about Mike Sutton, Tennessee Tech’s basketball coach.

      I have many questions and I guess the first has already been answered. How common is GBS and how easy is it to get a correct diagnosis? Would most neurologists have enough knowledge about it to recognize the symptoms? It also sounds like the disease progresses extremely fast. Is there treatment that can halt or slow progression if administered quickly enough?

      I lost my mom last summer and until a couple of weeks ago, we thought it was because she had started taking the generic Zocar a couple of weeks before. When another doctor reviewed her records, he told us it sounded like GBS. I had never heard of this before he mentioned it.

      Thank you for any information. May God bless you all. If my mother truly had this terrible disease, I can’t imagine, I don’t know. Words fail me.
      Kathy

    • Anonymous
      February 23, 2007 at 6:48 pm

      [COLOR=”SeaGreen”][B]Dustdemon…..you are truly a special person who has taken his vows literally…..in sickness and in health. No greater love is there than what you are doing and providing for the mother your children.

      [/B][/COLOR]

    • Anonymous
      February 28, 2007 at 11:54 pm

      Greetings of peace!

      I am Mr. Belbert Galvez, Guidance Counselor of one of the school here in
      the Philippines. At present, we have a student with GBS, and the school
      community are working to raise fund to finance IVIG of the patient. The
      15-year old patient is currently under Intensive Care Unit in one of the
      government hospitals. The both parents were jobless due to old age where
      in fact the father is suffering from stroke he has two working sisters but
      their incomes were not enough to finance the expenditures.

      Please help us and provide us link to where we can get it at a lower
      price. Thank you and more power!

      e-mail me at [email]bgalvez@ija.edu.ph[/email]

    • Anonymous
      March 1, 2007 at 5:20 pm

      Belbert,

      what is it that you are wanting to get at a lower price? Is it IVIg?? Also, how long has he been in hospital for? A little more information about him will help us tremendously.

    • Anonymous
      May 6, 2007 at 12:15 pm

      I’m now 68. Got a huge sliver of arsnic treated deckood in my leg in ’98, got GBS, totally paralyzed for 1 month, hospital for 3 months, walking in 9 months, back to being carpenter in 18 months. Stll have numb, tingeling feet and legs. Own a sailboat (Hunter 34) can sail alone, climb mast. Currently work as landscaper doing shovel and lifting. I am in mild to heavy aching in legs all the time – but WORSE if I don’t work. Heavy excercise, hard work is best for me. Use it or lose it. NO alcohol NO tabacco. NO stress. STRESS is a killer. Tried a desk job for a while, downhill all the way. Stay active.

      Questions? [email]gary39graham@yahoo.com[/email] Astoria, Oregon

    • Anonymous
      May 6, 2007 at 12:39 pm

      Dustdemon, God Bless You for your devotion to your wife. I have a wonderful husband, who has stood by me for 20 yrs after GBS/MF. I know that it is hard, but I know that she appreciates you more than she can say. The grandchildren can keep you going. You just can’t feel bad for them. Good Luck in your future.:D

    • Anonymous
      May 12, 2007 at 2:16 pm

      Dustdemon,

      My hat is off to you. I was the patient and watched my husband and 5 children try to figure out how to take care of me, the nurse. The did a great job, but I saw how hard it was for them and how disruptive to their lives. All their care and kindness made me love them even more. I’m sure your wife does, too.

      God bless you.
      Cdub

    • Anonymous
      May 18, 2007 at 1:07 pm

      Hi everyone. My name is Beth and I was diagnosed with GBS in 1991. I was 13 years old. I was paralyzed in both legs and on the left side of my face when I was taken to the hospital and life-flighted to Cleveland Clinic Foundation. It took them a week or so to diagnose me. Luckily it never reached my lungs. I was treated with what I think they called gamaguard. I may not be 100% on that. It was a long time ago. I was treated and appeared to have fully recovered. I never had PT, and never even follwed up as far as I can remember. We moved around a lot when I was a kid. Now, 16 years later, I’ve started having really strange symptoms. I’ve had back problems and sciatica for as long as I can remember, but the past couple of years it has been horrible. I started pain management and had a couple of injections that made the nerve pain worse. Last week the right side of my face went numb (the leg pain has always been mostly left sided), I had tingling and numbness in my right arm, and I felt very weird (for lack of better verbage). I went to the ER and they did a CAT scan and some blood work. Everthing came back fine, I was told to follow up with a family doctor.

      It occurred to me that my problems may be related to GBS. I started searching the internet and found this site. I never realized the significance of the illness I had. Should I find a neurologist in my area that specializes in GBS? Maybe I should have never had the injections for my back. This is all a little overwhelming to me.

    • Anonymous
      August 4, 2008 at 11:22 pm

      Hi Brandy! Could be GBS but then again it might be something else. I had a simular problem with my back and CT Scan showed nothing. Went to a back specialist and they found 3 bad disk requiring surgery.A CT Mylegram will show back problems that won’t show on MRI or regular CT Scan. But let the doctor know you had GBS. They might do a nerve conduction test also on you and you will have that report too to give to a neurologist. I think I would actually see both. Kill two birds at one stone and may find it not being GBS or might be GBS and actually could be both. Welcome to the site! Great folks in here and a loving family!

    • Anonymous
      May 18, 2009 at 3:29 pm

      Hi Beth
      I am so sorry to hear a young person going through such pain. Please see a neurologist as fast as you can. Facial paralysis can be a number of things, but best treated early. I hope you don’t have GBS but if you do, we are here for you.
      shie

    • Anonymous
      May 18, 2009 at 4:15 pm

      Welcome to the site! I just hate to see another member joining the group suffering from a bad illness! My prayers are with you and I hope you recover soon! Wishing you my best!
      Linda h

New to GBS

    • Anonymous
      June 6, 2006 at 6:05 pm

      Hi Everyone,

      My nephew was diagnosed with GBS about 10 days ago and is in ICU in Tampa, FL. Could you help out with a few questions? 1) What can the family members do (far and close) to support him? 2) What can family members do to help my sister and brother-in-law in the short-term and long-term? 3) Does anyone know of a great rehabiliation center in Florida or on the East Coast? Any help would be appreciated. – Thanks!

    • Anonymous
      June 6, 2006 at 9:15 pm

      Hi Rebecca,

      Sorry to hear about your nephew. I think something you could do is just to write, call, visit or whatever is possible and show your care and support. GBS can make you feel very helpless and I loved hearing from people. You didn’t mention if he is paralyzed but as he recovers in the hospital and rehab, the boredom can be horrible, books, magazines anything to help with that. My hospital had a computer and a dvd player which they let me use and that made me so happy.

      As for helping his parents, I would imagine that they are spending any possible moment at the hospital. Getting someone to clean the house, phone cards so they can call back and forth to the hospital when that is possible, and of course any support you can give them in person, by phone or however.

      I cannot help you with the rehab center information since I am in Michigan, hopefully someone else will have that for you. Take care and we are glad you found us.

      Jerimy

      [quote=RebeccatheIrish]Hi Everyone,

      My nephew was diagnosed with GBS about 10 days ago and is in ICU in Tampa, FL. Could you help out with a few questions? 1) What can the family members do (far and close) to support him? 2) What can family members do to help my sister and brother-in-law in the short-term and long-term? 3) Does anyone know of a great rehabiliation center in Florida or on the East Coast? Any help would be appreciated. – Thanks![/quote]