Hey locals..forum slowing down?

    • Anonymous
      January 17, 2008 at 11:26 pm

      Is it me or have the volume of posts slowed during the past three months? I mean page 4 gets me to 11-27-2007. Fewer folks getting sick? I hope so.


    • Anonymous
      January 18, 2008 at 10:47 am

      Hey Rocker:

      It does seem like things have slowed down a bit, but things have also gotten a whole lot more pleasant and supportive than it used to be. Nothing seems to increase the volume of posts like a good old fashioned flame war or a few angry rants. To me the slow down is a good thing.

      I also think a lot of the stalwart old time posters have slowed down their posting and are passing the torch to the next generation. I have slowed down my posting because it’s been over five years since onset and I am tired of being tired. I deal with fatigue on a daily basis so coming here and posting about it is something that I don’t think is helping me, although I still hope to help others.

      I don’t think there is a slow down in the number of people who get GBS, I just think that the forum community is waiting for some new leaders to emerge.


    • Anonymous
      January 18, 2008 at 1:05 pm

      I think Lee hit the nail on the head. Having spoken to some people I know, they have mentioned (and I feel the same) that sometimes they just need to take a rest from the forum, it does take a lot out of one at times. You probably feel the same way Rocker. Visiting patients, speaking to families/patients over the phone and also supporting the forum takes an emotional toll at times.

    • Anonymous
      January 18, 2008 at 1:41 pm

      To be honest, I usually come here when I am feeling down and need support. When no one else understands, I know my family here will. So if others are like me, that means a lot of us are feeling better – for a while anyway. I’m looking at 11 years of this crap and don’t know what I would do if I couldn’t come here and let off some steam.

      Thank you my family for being here when I need you.

    • Anonymous
      January 18, 2008 at 8:10 pm

      [B]Since Frank and Marge have passed away, I do seem to have posted less and less this last year. I do agree about passing the torch to the newer members now, maybe they can shed some more light on this difficult syndrome that they are affected by. They can help others as much as all of us older members have done in the past few years.[/B]

    • Anonymous
      January 18, 2008 at 9:21 pm

      I too have slowed down in posting and thought I was going to leave the forum for a long break. But I can’t. I am drawn back almost every day by the desire to hear people’s stories and even listen to the same question we have seen a hundred times. But mostly I think I am drawn by the need to touch people who understand. My life is not lonely but noone understands unless they have experienced chronic pain, endless fatigue and sitting in a wheelchair watching the world go by. I miss hearing from some of the old crowd but enjoy discovering the new ones. I find I must go the local support group meetings as well, just to hear and to be heard. So I will continue to lurk about and post when I can but if I don’t I am still reading about everyone and nodding quietly in agreement and support. Jeff

    • Anonymous
      January 20, 2008 at 12:01 am

      Jeff, do you play team oriented games online???

      I hoped it was because more are out in the parks as opposed to getting sick. That or my thread counts were in error. Anyway, I read a lot of good threads this visit!

    • Anonymous
      January 20, 2008 at 11:02 pm

      I don’t think at all that there are less people coming down with GBS or CIDP. I think that like Lee & Brandy said, many of us have been coming here for at least 5 years, some even more. I am getting to the point where I feel that I have enough posts here on the archives, that I have answered every question that has been brought up, that I need a rest once in awhile.

      As with most forums, turnover is quite common. I remember when I first came to the forum in November of 2002, people like Jethro, Cathy B, Brandy, Dick S, Gene, Jerimy, & Marc M posted on a daily basis; now I don’t know most of the new people. But even if I don’t post as often, I hope people will feel free to PM or email me with any questions or concerns. I have stayed so long because I have had such a severe case of CIDP, which is rather rare.

    • Anonymous
      January 21, 2008 at 9:01 am

      Good morning everyone.
      Well today is my 1 yr anniversity starting IVIG. today I am 100% better with hardley any problems. I was definatley happy to see last yr come to an end. I pray I nor anyone has to repeat a yr like that. My bi-pass is doing great and have not smoked in almost 6 months. I am still haveing some back pain but that is even better.
      I made a promise to my God and that is I will give as long as I can to others. I feel there is no time limit or age limit. I met a 28 yr old woman with GBS and visited her in the hospital.age didn’t have a thing to do with it.
      Every morning and evening I check our site and will reply to ones I feel need support. My feelings there is no retirement from helping others. All of you were here for me when I 1st arrived and I wasn,t concerned how old you were or how long you have been here. I have seen many get better and they are gone. I can see this every day in life and they are the ones that get what they need and do not care about the ones that follow. They have what they wanted and they are better and it now is every one for themselves.
      All of you have helped me in many ways and you will in the future. it would be awful to one day write about your pain or lonleyness and no one replys. Think about it. (Your friend for life Steve)

    • Anonymous
      January 21, 2008 at 10:44 am

      Dear Steve:

      You make a good point. Thanks for your perspective. It gets easier and easier to forget what it was like to be new to GBS, and for me, to be new to a forum family. And as strange as it may seem, that is one reason why I am posting less. So many people come here who are brand new to GBS and I’ve said what I could 100 times before. I feel that the posting almost takes on a life of its own and the raw emotion and pain of GBS diminishes over time and I am less qualified to post to newcomers than people who are one or two years away from GBS.

      Maybe this can make sense to you and maybe you will see what I am talking about in three or four years.

      To me, for this time, I feel that I can best serve the community by dealing with people who are close to where I am in terms of dealing with long time residuals and fatigue. This is what is more real and relevent to me. I also want to maintain a safe and caring community for the long term posters, so I post a lot on the ‘Lighter Side’ forum.

      It doesn’t seem as honest to me to post to a newcomer unless they ask me about what GBS will mean to them five years down the road. To me, this isn’t a bad thing, but we still need people who are one or two years out to step up and take an informal leadership role, because that seems like the natural order of things anyway.

      I hope some of this made sense to you.


    • Anonymous
      January 21, 2008 at 11:47 am

      [B]I will be here for the long haul, but I just don’t post as often as I once did.I try to help in any way that I know how. Like Pam has said we have answered so many questions over the last (7 yrs for me) that we thought that the newer members can handle alot of the questions that need to be answered. I personally have lost alot to GBS/CIDP with the passing of my husband and my sister/best friend Marge that alot of you don’t know. It has taken a toll on my emotional and physical health, so I need to step back into the shadows every now and then to take care of my own health which isn’t to great right now.

      We all deal with GBS/CIDP in our own way.

      Any new comers with GBS/CIDP or caregivers can send me a private message and I will try to help in any way that I can.

      My hope is that you can all understand where I am coming from.This community is still family to me and always will be.:) [/B]

    • Anonymous
      January 21, 2008 at 4:26 pm

      I want to thank Randy & Lee for your replys.I was not pointing fingers to the ones here as everyone of you have been here for me in the past year and I humbley thank everyone. What I was trying to say was so many forget where they were in a very very short time.I remember the 1 st one to respond to me and that was Chrissy. and it meant so much to me.
      My beliefs are that by giveing we receive and with some people they do ask the same things over and over again and again.Lee I understand where you are coming from and I do understand. Brandy you have helped me in so many ways.I do feel that if someone needs help or just to unload one of us will come forth. What is sad is that so many that have had a mild case of GBS get well and run.not realizeing or really careing about the ones still suffering or have suffered for yrs.I have had many say you have been so lucky. No it isn’t luck it is a blessing.
      I have changes in my life after my triple bi-pass. I realize my body was in reality dead. My spirtual self had left and a machine was keeping my body going. I realize spirtually I was in a beautiful place for a few hours. and when I woke up there were changes with my GBS. my pain on my right side had gone and over 70% of my problems had gone. My faith is very very deep but of the spirtual nature. not of any religon. I cannot and will not judge. all I will say is bless all of you for your love and prayers and careing. you are my family.
      Your unconditional friend (Steve)

    • Anonymous
      January 22, 2008 at 11:28 am

      😮 I have not posted often in this forum, because quite honestly, I just go “blank” and do not know what to say. I read everything, and I see by the numbers that there are more readers than writers out there. My hands do not work well. I used to type for a living – and now I have to peck out one letter at a time and it is frustrating. I cried in pt during a music therepy session when I realized that playing the piano was an impossibility now. Anyway – I am glad for everyone who does post and read it eagerly. I will try to particapate more in the future.

      GBS-MFv 1993 and 2004

    • Anonymous
      January 22, 2008 at 4:38 pm

      Thank you for your reply and please stop thinking playing the piano is impossiable. I feel every thing is possiable. all we have to do is with faith find the way.When I reply I say what is in my heart. Bless you and you are in my prayers ( Steve)

    • Anonymous
      January 22, 2008 at 7:15 pm

      🙂 Thank you, Steve. I do feel like a ray of sunshine just smiled at me.:D
      GBS-MFv 1993 and 2004

    • Anonymous
      January 22, 2008 at 9:16 pm

      I can understand how trying it can be for the “veterans” of gbs to re-live their onset and treatments so I want to say [U]thanks[/U] to every one of you that have replied to my posts. You have filled a very important place in my life by educating me, supporting me and encouraging me as I seek proper diagnosis and treatment.

      Since this syndrome is so rare, a person can easily feel frustrated and isolated. That’s where you guys come in! It may sound corny but it’s as if I can actually feel you guys put your arm around my shoulder and say, “Hey, you’re gonna be okay. Get plenty of rest, take each day as it comes!”. That has been invaluable to me.

      The neuromuscular MD said that since I have positive reflexes, I do not have GBS. He says, “We NEVER see people with reflexes and have GBS”. However, he says what I do have mimics gbs. I have another LP in the morning so we’ll see.

      Whatever the diagnosis ends up being, I want you all to know that finding this website and especially this forum has been a lifesaver for me. You are undoubtedly the bravest and most unselfish group of folks I’ve ever known. Thank you!

    • Anonymous
      January 23, 2008 at 6:19 pm

      Thanks to Ali, i found this website a few years back. I live in the Netherlands, and I have CIDP. So you may say, why don’t you use a Dutch forum or something like that, but there is, as far as I know, no forum on the web, that is as warm, caring and educational as this one. I do not post a lot, maybe because I have difficulty expressing myself in another language, but I read as much as I can, and it really helps me a lot. What I want to say is that I hope that I can keep coming back here for a long time to come. I really feel at home here, thank you all very much!!!!!!!!! (esspecialy you Ali, for bringing me here).

      (I tried my best English);)

    • Anonymous
      January 23, 2008 at 9:20 pm


      your english is excellent. post more often if you care to. language is not a barrier. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      January 23, 2008 at 10:26 pm

      Vic ‘Bruce’;)

      Your english has always been very good, I dont think many of us could speak and write a second language as well as you do, especially since you dont speak it often. In all the years knowing you, I know that you (and I) do often take comfort in the forum because we realize we arent alone in this and that people do really understand, and we are able to comfort one another during those tough times – and when things are really bad, one needs only to pick up the phone.

    • Anonymous
      January 24, 2008 at 12:05 pm

      I am fairly new to the forum so I can’t comment on whether it is slowing down or not. But I would like to make some observations:
      1. The forum is a wonderful source of support and knowledge. As many have said many times over, it is so difficult to get information from doctors – either they don’t have time or don’t think we understand or don’t know. The knowledge you share is fantastic.
      2. I am sometimes envious of you old timers (in forum years) who seem to know each other so well and share your thoughts and prayers for each other. It is truly an amazing community and thank goodness we have the internet.
      3. The forum is addictive. I find myself checking the new posts at least three or four times a day. I don’t want to miss anything.
      4. As tired as some of you are of continually answering questions and helping others, I notice that you keep on doing it. Your altruism and support is truly wonderful. You all deserve credit and thanks, especially from us newcomers.
      Keep up the great forum.

    • Anonymous
      January 24, 2008 at 7:42 pm

      Hey Andrew, thank you for your affirmations for us “olds” (that’s what they call us in New Zealand 🙂 We really do care about everyone, we just need a break now and again. It’s like I always remind my husband/caregiver to take a break ’cause when you return you’ll be refreshed and have a clearer perspective once again! That’s just part of life.

    • Anonymous
      January 30, 2008 at 5:00 pm

      I am new to the forum and before I wrote my first post, I read through many. The “elders” of this group help in so many ways, giving advice, lending a sympathetic ear; you are a wealth of information and experience. Hey you guys are holding the flashlights, showing us newbies the way, how to cope and that there is hope. You are very much appreciated!

    • Anonymous
      January 30, 2008 at 6:25 pm

      Hi Rocker & Senior Members,
      I am brand new to the forum and sincerely wish it was lack of illness that was slowing it down. After speaking to ladykitUSA I think it’s an awareness issue that only through education to the medical facilities will it change. She said they’ve been getting more & more calls from this part of the state. When I was diagnosed in Nov. ’07 I was informed about the foundation through my insurance companies case management program. My doctors didn’t mention it, the hospital didn’t mention it and I never dreamed there was a support group such as yourselves out there ready to listen to me much less educate me on prognosis & treatment. And trust me I’ve learned more from his forum than any book I’ve read so don’t think anything you have to say is not important anymore since you’re more than a few years into the healing process. You can provide insight on long term residuals and describe things better than any doctor that’s never had the syndrome. I just want to thank you for all your informative posts and I am going to do my part to try & educate our local medical facilities on awareness since I spent several days thinking I was crazy when they couldn’t tell me exactly what was wrong with me. Thank you all and keep praying someday they’ll find a cure!

    • Anonymous
      January 30, 2008 at 11:53 pm

      [FONT=”Comic Sans MS”][SIZE=”2″]I’ve been lurking about reading, greedily, all the various threads since my diagnosis in July of 2007.
      Like many others, I was shy about posting, didn’t really know the etiquette (still not sure:o)
      One thing I am sure of though, is that you all have helped me tremendously.Thank you so much.
      I spent most of the day laughing my way through the Tavern and there’s no better medicine than that.
      Thank you for letting me be part of the family[/SIZE][/FONT]

    • Anonymous
      February 2, 2008 at 5:19 pm

      I am sorry I haven’t been around as much. Really needed an emotional break, I hope you all know you can contact me anytime. I have a girlfriend that I adore and she is my focus now, but this place and you all will always be a priority for me.