New at this

    • Anonymous
      March 31, 2008 at 12:07 pm

      Hi Folks..I am totally new to this web site and forum. I was dx with GBS March 22, 2007 and was in the hospital for a month, so it’s been a year. I have really enjoyed reading everyone’s notes and encouragements to each other. Silly, but I’m a bit nervous talking to you guys for the first time. It’s so good to know that I am not alone and alot of you have had it so much worse than I.

      I hope I’m doing this right.


    • Anonymous
      March 31, 2008 at 12:15 pm

      Hi Suzon, yes you are doing it right ,no reason to be nervous we are all in the same boat. ๐Ÿ˜€

    • Anonymous
      March 31, 2008 at 12:19 pm

      Hey Suzon,

      Welcome to the forum! I am also coming up on my one year anniversary. So how are you doing today? And just so you will know, there are a LOT of very friendly folks here:)

    • Anonymous
      March 31, 2008 at 2:52 pm

      Thanks GreaseMonkey and GAB. I’m doing pretty well today. My major thing is the numbness still in my hands and legs. When I was reading through the Forum and some of you commented on the residuals you still have and may have forever and look perfectly normal. That is one of the hardest things for me to deal with. My husband even thinks things are going great because I make myself try to do everything. Don’t get me wrong. I really am doing great considering everything. I have been given another chance at life and this time I’m trying to take full advantage of it and live each day to the fullest.

      What’s going on with you two? Hope all is well. Please tell me how you are feeling. I really care and look foward to talking with you all soon.

      March 22, 2007
      Charlotte, NC

    • Anonymous
      March 31, 2008 at 3:19 pm

      Suzon, You’ll soon find you have discovered a new family here. So many wonderful people with so much to share.
      My suggestion to you is to be sure and share everything that is going on with you with your family. Since many of us ‘look fine’ people assume everything is great. I think it takes a lot out of a person to carry on as if all is well when you are really fatigued and maybe experiencing discomfort.
      Take care, and stay in touch. Lot’s of information here.

    • Anonymous
      March 31, 2008 at 7:47 pm

      Hi Suzon. Looks like you beat me into the hospital by about a week. I still go to bed much earlier than I ever did in my life and my toes are numb. Hang in there and welcome to the family.

    • Anonymous
      April 1, 2008 at 9:34 am

      Hello Suzon and Welcome to the family! I have found that my residuals change alot. I have good days and bad days where the numbness goes from my wrists and ankles to only the toes and then somedays above the wrists and ankles. Some days there is burning like they are on fire and other days they burn like they are frost biten. A few days they were so close to being normal I was concerned that I had something wrong. I am albe to do steps carefully and just watch where I step. No reflexes in the knees yet and the Doctor said that is not important. As you start to see that those things will not keep you from doing things and you can function you learn to ignore the residuals and just go on with life. They are a constant reminder that you had GBS and life goes on. Remember that the first things you noticed from your attack is the last things to heal. The nerves heal at such a slow rate of 1 mm per day and for a 6 ft person it takes years to go away. I am glad I am short. After the first few months the residuals take longer to notice they are getting better or gone. Before I measured things by the day or week or even the month… I can tell by my Journal that I feel better and have become stronger over the last few months. Just be glad you are getting better slowly. It could be alot worse, just look around you in rehab. Don’t hold back from telling people how you feel inside. They can only tell your looking great on the outside. Don’t think of it as whinning you are sharing so they understand your fatigue and early bed time. You still have to pace yourself so you don’t have a relapse or set yourself back. Some may never understand….your friends will listen and your family will soon discover you are not the way you used to be. It just takes them longer because we have spoiled them, now they have to spoil us! Just give your caregivers a big hug and let them know we need them more than they understand. Stay possitive and lean on us for support!

    • Anonymous
      April 2, 2008 at 3:28 am

      Hi, Suzon! Looks like we have a lot in common! My name is Suzanne, and I got GBS at almost exactly the same time that you did. It hit me in late March of last year, and I spent all of April in the hospital.

      I’ve been fortunate to make a “good” recovery, which means I have a lot of ability still but unfortunately also means I still have many problems. Finding the right medications to help ease remaining symptoms is invaluable, though, and it really can help you get your life back post-GBS. I never was one to rush to medicate myself before this happened to me, but now that I know the right meds can mean the difference between pain and less pain, muscles cramps/tremors and less cramps/tremors, function and less function, lying down and standing up, sleep and no sleep, eating and not eating… Well, now I do what I need to do, and that’s why I have as much of my life as I do right now. That has been a hard thing for me to get used to.

      Also, coming to terms with “my new normal” has been a challenge, but after I got to the point where I accepted that I’m never going to feel the way I did before GBS and just stop expecting that elusive “full recovery” that everyone seems to promise so casually… It really does help a lot. It’s like I’ve let myself off the hook and stop expecting myself to be or do things that just aren’t possible anymore. I’m just grateful for everything that I still have and everything I can still do.

      I used to get bitter and jealous at everyone else my age who can do so much and who value life so little, but then I realized that everyone has their own problems. GBS just happens to be mine, and I wouldn’t trade the good things in my life for anything just to get rid of the bad. GBS has given me a perspective that is invaluable, and I live with a level of gratitude I never would have had before as well as with a sensitivity to the needs of others that couldn’t be there without the personal struggles I’ve been through.

      Sorry to ramble a bit, but I guess I’m feeling philosophical tonight! Ha ha! Anyway, welcome to the group. I look forward to getting to know you better. ๐Ÿ™‚

    • Anonymous
      April 2, 2008 at 1:46 pm

      Please let me echo what karmacat says. It is all about perspective.

      Take care and be well.

    • Anonymous
      April 2, 2008 at 8:21 pm

      You all have been so great. I hope I didn’t give anyone the impression that I am doing poorly. Just like you said..paraphrased of course… I live like nothing is wrong with me. And really, there isn’t. I have learned to live with the numbness and no reflexes in my left knee. I told my daughter that if I woke up one morning and didn’t feel all of these residuals I would really think I am sick. I am and have been finished with pt since last September. I still go to the gym and work on the same machines occasionally, but probably not often enough.

      Guess what I did today!! I bought myself three pair of “big girl” shoes! I am so tired of wearing tennis shoes. I’ve had to wear them for the past year because nothing else is comfortable with my sleeping feet. I hope I’ll be able to wear the ones I bought without much difficulty.

      I am so thankful that I found you all.


    • Anonymous
      April 2, 2008 at 9:39 pm

      Hi, Suzon! Welcome! This is a great bunch of folks here…so supportive and helpful. Everyone was so patient with me in my early GBS days, answering a myriad of questions.

      And Congrats on the “big girl” shoes! I know just how you feel. I’ve had nothing but heels in my closet for years except for one pair of work shoes (I’m a nurse so I wear tennis shoes…”walking” shoes). Until GBS in Dec. ’07. Now I live in the tennis shoes. I look longingly at the heels and say, “Someday!”. ๐Ÿ™‚

      Take care!


    • Anonymous
      April 2, 2008 at 9:50 pm

      Congratulations! I too know the shoe dilema, only being able to wear tennis shoes. I have to wear white because I can not find any in black in this area. I think it was Sears that said they could order black ones for me. Nice brag to read today. March on forward with your progress! Stand tall in those heels! Throw out the socks with the rubber treads! OK maybe not! I got used to them keeping my feet warm!

    • Anonymous
      April 6, 2008 at 3:34 pm

      Thanks to all of you. Believe me, I have not gotten rid of my tennis shoes and will probably wear them 99% of the time. I found some great tennis shoes but they are expensive. The are Spira shoes and come in black and white. Since I have gotten mine I really don’t want to wear any thing else..

      I’ll talk to you all real soon. This typing is a little difficult right now.

      Bless you all.

      March 07
      Charlotte, NC

    • Anonymous
      April 10, 2008 at 2:18 am


      Welcome and nice to meet you. We are here to help however we can. Having others to talk to that have been through this disease was the best thing for me the past 4+ years. Let us know if you have questions or need anything at all.