• Anonymous
      December 4, 2010 at 8:50 pm

      7 years and still going. It’s been awhile, And tried to learn and cope with GBS . I just want to say to new members who just have GBS. To be patient if you need Info. This is the place to find answers. GBS is a long and for some a short career of new experiences of life expectations. The good part is that. We are still alive and we have to thank about that God bless all and thank you. 😀


    • Anonymous
      May 23, 2008 at 11:53 am

      Hi my name is Brenda and I was diagnosed with GBS Oct 12 2007 and then was upgraded to CIDP on may 5 2008, it has been a real learning curve for me one day walking 3 kms to work and then in hospital unable to move or talk or breath my husband Rosario has been a godsend and our kids are the best we did a great job, I was on IVIG and then steroids witch I am still on and will be till the end of summer my doctor says that he has never seen such a recovery but that at some point I will relapse but I have been so blessed with all of this that you cant live in fear of it you must dance and sing and smell the flowers, its not that I’m saying that its hasn’t been easy, the bills are out of this world and every day there is someone looking for money but I’m here and I love my husband more than ever and the kids and grandkids are our sunshine, almost 3 months in hospital and the thought of never seeing my family again is what drives me, there is nothing more scary than the thought of never holding or talking to them, so let us all help each other and see were we go, and to all of my fellow GBS and CIDP survivors lets take on the world for we know how to fight

    • Anonymous
      May 23, 2008 at 5:04 pm

      Hi Brenda,
      Welcome.you will find a lot of caring people here.

    • Anonymous
      May 23, 2008 at 8:12 pm

      Welcome Brenda, not so sure about your choice of words – “upgraded” to CIDP. After 3 years post GBS diagnosis, I am seeking a specialist at a research hospital. My GP, has been talking CIDP but admits to being too uneducated for the task.
      I, too, have 3 wonderful, adult children, and now 3 grandbabies.
      I used to begin 5 days a week with 2 or 3 miles walk/jogging. What a transition!
      I understand what you are saying.
      Keep us posted on your progress.

    • May 23, 2008 at 11:10 pm

      My 11 y/o son was on the same journey, gbs, cidp, gbs, and now cidp. I am concearned at your remark that you will stop treatment at the end of summer and the doc fears you will relapse. You WILL, but he is wrong in taking you off of the ivig. You have to stay on it. Each time you relapse, you go backwards with any repairs to the nerves you have made. Treatment has to be continued in order to continue healing. Each time you have a relapse, you might not ever regain that area of demylienation back. There is no option. What could be done is after a long time ( a year for my son’s treatment plan) you can start spreading the ivig more. For example, we get loading doses once a month over four days, next year, we will bet them every six weeks and so on. It is important to remember, each persons plan is different. I have some abstracts that indicate some can beat this, but the time spans vary, some were on treatment for as little as three years, others as long as 13 years. some on this site have been in remission. how remission is accomplished is complicated, but the short of it, ivig or whichever treatment you get, works to allow the antibodies to produce and the auto antibodies to decrease. Way more complicated, too much to write. If you want to talk, pm me and I will give you my number, or you could leave me yours. good luck, and in my opinion, you have jumped the biggest hurdle to recovery, a loving considerate care giver. I am so happy you have someone in your corner. Best wishes, visit often.
      Dawn Kevies mom

    • Anonymous
      May 24, 2008 at 10:40 am

      thank you to all that have responded to my post it is great to hear from you and to read all of your posts,my neurologist is the most wonderful man in the world and deals with GBS and CIDP all the time, I had 6 treatments of ivig and now on steroids heavy steroids that he is slowly taking me off by the end of summer. The reason that he and I use the word upgraded me to CIDP is because he states that the steroids are making me get better, I havent had a IVIG treatment since I left the hospital in January 2008, and I am walking and running and I feel almost 90% to what I was in June 2007 before the onset of this ordeal. He is the one that tells me that I well have a relapse and to call right away if I feel any tingling or numbness, the tiredness is a great factor and I try to get 8 hours of sleep a night. I was in a wheel chair for about 3weeks and then a walker for 2 weeks and then a wall hugger, but now I can say that I wear my heals and can dance with the best of them. The stairs are me arch enemy and have gotten some great exercises from my physiotherapist that are rebuilding the muscles in my legs. I wish that everyone could have results that I have had, it truly is a miracle, and I hope that being in this forum with such a wonderful and truly special group of people will help me and my special angels conquer this battle. Thanks again to everyone.:p


    • Anonymous
      May 10, 2006 at 10:36 am

      [FONT=”Franklin Gothic Medium”][/FONT] hi just wanted to update everyone!
      doing ok now dr put me on gabipentin now 1800mg a day it is working ok!
      car accident stuff being settled really fast and coping ok. now getting used to situation and the fact that I must depend on others for help at times(alot).
      my friends are staying away afraid of seeing me due to the wheelchair.
      just getting used to physical stuff now.but seeing how I live in a handicaped apartment building it helps cause I can fall back on them to talk.

    • Anonymous
      May 10, 2006 at 10:54 am

      Thanks for dropping in and saying Hi! Glad the gabipentin is helping and that you seem to be coping well. I hope for the best in your continued improvement.


    • Anonymous
      May 10, 2006 at 11:00 am

      Dear Eryn:

      It is so sad to hear that friends are staying away from you. A wheelchair doesn’t make someone less of a person. I have found that adversity has the potential of making someone a better and more interesting person. At least you have the opportunityto find out who is a real friend and who is a friendly acquaintance. You may find out that you have some friends where you didn’t think you did.

      Eryn, please take good care of yourself, you have been through a lot.


    • Anonymous
      May 10, 2006 at 11:43 am


      I am so sorry to hear that your friends are staying away, but I am glad you have people to talk to in your apartment building…perhaps you will find new friends there. It is hard to depend on others when you are not used to doing so but if you take it one day at a time things will get better.

      One thing I found that has helped keep my spirits up is to keep a journal of the little things I could do each day (write my name, get in and out of a bath tub, stand on my toes, etc.). When I look back on earlier entries I can see just how much I have improved.

      Please take care of yourself!

    • Anonymous
      May 10, 2006 at 12:02 pm

      Hi Eryn,

      Good to have you back with us. Thanks for your update. Eryn, friends that stay away from you because you have a medical condition aren’t really friends in my opinion. The same thing happened to Frank, so we said “good-bye” to those so called friends. A true friend stays by you through everything.

      Bless You and take care.:)

    • Anonymous
      May 10, 2006 at 12:58 pm

      I can relate to some of what you said. I am semi-dependent on a wheelchair now (I’ve gotten stronger) and the one who I thought would stick by me no matter what, just disappeared when I could no longer do what we used to do. Now, the one who I thought would not be there, has shown she’s my best friend.

    • Anonymous
      May 10, 2006 at 1:58 pm

      Dear Elizabeth:

      That is such a good story. You can never tell about people until they are tested by adversity. For some people adversity allows the light to shine through. Others it just show there was no light there in the first place.


    • Anonymous
      May 10, 2006 at 4:19 pm

      [FONT=”Century Gothic”][SIZE=”1″][SIZE=”2″][COLOR=”Magenta”][/COLOR][/SIZE][/SIZE][/FONT] I have been finding lately I need more support and a place to vent where it will be understood as frusteration not neediness. so like I said here I am now admiting that I can not do this alone anymore.

    • Anonymous
      May 10, 2006 at 4:23 pm

      Eryn – When I first got out of the hospital and found this site I vented like crazy. Everyone was great and very supportive. It is okay to let people know how you are feeling. Most of us have been there and will understand completely.

    • Anonymous
      May 24, 2006 at 11:50 pm

      just wanted to check in I caught a nasty viral thing that has decided to take over my body when it wants.(lol) there is a super cold/flu making it’s rounds and viral infections are a bonus to them.I have attached a picture recntly taken of me so you guys can put a face to a name.

    • Anonymous
      May 29, 2006 at 1:29 am

      What is the most a person can take of gabipentin? my pain level gets higher every couple weeks and now sweating is starting to happen.I want to be safe and informed so advise is welcome and suggestions too!

    • Anonymous
      May 29, 2006 at 8:07 am

      hi eryn,

      in test trials the pdr says 50,000 mg/day were given to folks w/o serious probs. in reality 5600 mg/day is max cuz that’s the most the body can use. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      June 16, 2006 at 2:13 am

      Is there any other meds that work well with gabipentin my skin is burning alot.It feels like someone is lighting a match up and down my left arm and pinching my skin with hot pins and that is just a little of the burning. but on a brighter note I will be getting a scooter so I can get around better so the wheelchair is not needed also I am getting transfer poles and probabally a lift there are tracks on the ceilings here cause I can’t get out of bed and a pole won’t benifit me.I have been falling alot and not being able to transfer myself due to my nerves not sending the message to the right parts of my body.

    • Anonymous
      July 14, 2006 at 1:32 am

      hey everyone I am getting a scooter donated to me and am getting it latest monday and I now have 2 bath assists a week. also a new care coordernator and a few more pieces of equiptment so I can be independant when going out and at home.my meds were changed I am taking 1200mg 3x a day plus busprone for break through it is working so far.
      I am making alot of new friends and the old ones are slowly comming back but they have no idea what to say to me they just stare and hope I don’t have to go to the hosptal(lol) not sure why I would have to anyways!
      things are coming together slowly and I am now realizing that it is ok to be in a chair and become the person I want to be.when my physilcal changed I changed and it will take a long time to adjust to it all I need to do is allow myself and my body to heal and accept my limits.thank you to all of you for helping me and encouraging me through all of the changes and bumps along the way.

    • Anonymous
      July 14, 2006 at 6:02 am


      I have been reading your posts for over a year now, and I am so impressed with your positive attitude. I truly hope for the very best for you in the future. You Go Girl!!

      P.S. I am very happy for all of these latest “developments” that will help you along the way!!!!!!!!!!!! 🙂 🙂

    • Anonymous
      July 16, 2006 at 5:25 am

      scooter received yesterday nice to have wheels now that doesn’t use leg or alot of arm work!

    • Anonymous
      July 16, 2006 at 10:09 pm

      Time to pimp your scooter Eryn 🙂

    • Anonymous
      July 18, 2006 at 12:49 am


      Glad to see you have a scooter. That will be great for your independance. Keep up the positive attitude and you will do well.

      Best Wishes

    • Anonymous
      July 26, 2006 at 11:30 pm

      hi again my luck changed in a bad way and good way !
      I had another car accident last monday on DATS again I strained my back and injured shoulder before that I was diagnosed I have nerve damage in my lumber area and soft tissue damage in lower back.
      but now I am getting a wheelchair,hospital bed, and transfer pole, also a prn care for personal care so it is good and bad. I am a month or so behind physically but I am doing ok now.

    • Anonymous
      July 27, 2006 at 2:25 am

      Oh Eryn ~ you are so brave! I’m sorry for all the set backs you have had but I too am grateful that you have care. Just keep up comin’ up smiling 😀

    • Anonymous
      July 27, 2006 at 3:11 am

      good that you dropped in to say these words :)and gud to know you are doing okay!

    • Anonymous
      August 1, 2006 at 10:54 am

      can someone tell me something! Why can’t men clean and why can’t they read either for the last 4 months the phone company has been comming out here and saying nothinfg i8s wrong my phone is crapped out for close to week and they can’t follow simple instructions to call my cell phone. they insist on calling my home phone which does not work.Can they be declared blind now cause I know blind people that see better than they can! ++