Welcome To All Who Enter Here New and All of Us Senior Members

    • Anonymous
      May 7, 2006 at 9:41 pm

      On behalf of this GBS/CIDP Family I would like to “Welcome any Newcomers”

      and our returning “Family Members.” This site was down for way to long and I suspect we all were very upset by this, But we are back now and we will be stronger for it. This site is a Godsend for all the people entering here and I hope we all continue our fight to get the word out about GBS/CIDP.

      Also I would like to thank The GBS/CIDP Forums from the United Kingdom for
      their graciousness of having us with them and I hope they will continue to post here as well.

    • Anonymous
      May 7, 2006 at 9:56 pm

      hmmm, i can login on my laptop, but on my pc this site says me &/or my password are not valid. hi brandy, lee, ken, & all. i’ll read all the posts as soon as i get this snafu fixed. gene

    • Anonymous
      May 7, 2006 at 10:01 pm

      hey, for no known reason my desktop is now accepting me on this site. woohoo! take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      May 7, 2006 at 10:02 pm

      I too am glad to be back on, and am most grateful to those who have worked so hard to get us here.
      Mary Ann

    • Anonymous
      May 7, 2006 at 10:19 pm

      Brandy! Hey Girl we have to catch up with each other! πŸ™‚
      Please be kind to us geeks. At first we all wanted the old forums saved. As someone that does that for the individual user that is my primary concern.
      I don’t do major networking but I know the pitfalls and the months it takes to create a protected program like the one we are using. I heartily agree with you that we need this site and, like you, jumping with joy it is back on-line!

    • Anonymous
      May 7, 2006 at 11:50 pm

      Hello everyone, it is so good to be back. I checked and checked the site and near gave up.

      So happy to see it back. But am sad that we have none of the old posts.

      Cody, if you read this, I got your card. Unfortunately I am horrible at returning them.

      Things have been rough since the site was down. Been pretty discouraged.
      But seeing this board sure makes me happy.


    • Anonymous
      May 8, 2006 at 12:07 am

      Hi All

      Finally – like above I almost gave up – good to be back but boy this is different — almost too old to change!!!


      CIDP finally diagnosed 2000

    • Anonymous
      May 8, 2006 at 9:46 am

      Dear Zeesuezee:

      It’s good to see you back. You were one of the first posters on the old site and a real solid member. It didn’t seem right if you weren’t here.

      The new site has a lot of really cool things going for it. If you give it some time, you will be impressed. One thing, it is 1000 times more secure than the old site. I’d rather not have to rebuild again.


    • Anonymous
      May 8, 2006 at 10:05 am


      Glad to be back and see that we can finally communicate again. Sometimes I just need to talk to someone about some of my aches and pains and then I feel much better. I know that we all have a period of adjustment to go through with the new site, however, since we are experts at accepting changes in our lives, this shouldn’t be too difficult.

      Take care.;)

    • Anonymous
      May 8, 2006 at 10:57 am

      Dear Jan:

      Very well said.


    • Anonymous
      May 8, 2006 at 10:57 am

      Hi Family,
      We become a family because we feel what you feel and with that comes understanding. I am so glad that we’re back, that made me realize how very important the forum is to us.
      I think the first two things we should do is to help our BRAND NEW NEWBIES, then help each other. After that, if anyone can restore posts we lost, we need to do that. Each one of us probably deeply regrets not printing out important ones. I know I do.
      Once these are under control, we can try to organize posts until we find out what the administrators are going to do about CATAGORIES.
      From my Heart

    • Anonymous
      May 8, 2006 at 11:37 am

      Hi Sue, My Partner In Crime,

      Glad you’re back with us. How’s it going? How’s the kids and Jeff?

      Ok now let’s get into trouble. πŸ˜‰ πŸ˜‰

    • Anonymous
      May 8, 2006 at 11:49 am

      πŸ™‚ πŸ˜€ Hi Everybody,
      Its great to be back on line again. Now we have to start rebuilding what took us years to develop.

    • Anonymous
      May 8, 2006 at 11:54 am

      Hi, everyone-and especially to Ali who alerted me the site was back up. It’s good to be home! Take care everyone-and talk to you soon.

    • Anonymous
      May 8, 2006 at 12:01 pm


      Is that you Marc? I kind of think it must be with the advice you have given.

      If it is you, glad to see you back.:)

    • Anonymous
      May 8, 2006 at 1:10 pm

      Welcome back Steph!

    • Anonymous
      May 8, 2006 at 5:22 pm

      [FONT=Comic Sans MS][SIZE=3][COLOR=plum]Hey, all you Forum old-timers!!![/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=plum]It is SO good to be back! I’m in the process of finding the little ‘fun things’ our new webpage has to offer. Kinda fun. [/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=#dda0dd]See you on the Boards![/COLOR][/SIZE][/FONT]
      [FONT=Comic Sans MS][SIZE=3][COLOR=#dda0dd]Debi[/COLOR][/SIZE][/FONT]

    • Anonymous
      May 8, 2006 at 6:04 pm

      Dear Debi:

      That’s the spirit! You know, there are some pretty cool features if you play around with the site. A few partitions would certainly be welcome.


    • Anonymous
      May 8, 2006 at 6:24 pm

      I’m seeing right now that Driveby Mike is here. Welcome back Mike.

    • Anonymous
      May 8, 2006 at 6:55 pm

      Jan, I love the way you put that. You said it superbly.

    • Anonymous
      May 9, 2006 at 4:47 pm

      Bringing this thread back up for the newcomers and older members to welcome them all back.

    • Anonymous
      May 9, 2006 at 4:53 pm

      [FONT=Georgia][SIZE=3][COLOR=#9932cc]Interpretation of above: Hugs to you Drive-by Mike!!!!!!![/COLOR][/SIZE][/FONT]
      [FONT=Georgia][SIZE=3][COLOR=#9932cc]I noticed Mike was here, too, B! It’s exciting watching people come back![/COLOR][/SIZE][/FONT]

    • Anonymous
      May 9, 2006 at 4:58 pm

      I know Deb, I sit here at the puter waiting to see the old familiar names come back. We need all the help we can get in helping all the people here since all of our medical info was wiped out.

    • Anonymous
      May 9, 2006 at 5:12 pm

      Brandy is planning her outfit for the junior (member) prom. Big shopping hint: make sure gown is color coordinated to tattoo.


    • Anonymous
      May 9, 2006 at 5:13 pm

      Everyone will have a “Join Date” of May, 2006… That is kinda neat… Like an invasion or something… πŸ™‚


    • Anonymous
      May 9, 2006 at 5:43 pm

      Welcome back Eric. Good to see you.

    • Anonymous
      May 9, 2006 at 5:53 pm

      Hey Ever’ body!

      Glad to see the site is back and I’m loving this new stuff, woo hoo!

      except, i miss my waving smiley πŸ™ and :rotflmao: as well!

      all in due time i’m sure!

      thanks for the email Donna!


    • Anonymous
      May 9, 2006 at 6:01 pm

      Your welcome Eric.:) πŸ™‚

    • Anonymous
      May 10, 2006 at 2:41 am

      Hi everyone, it is very nice to be back. I used to check up daily about this site but in vain. Yesterday I got this and not only glad but gained some energy again to live with ‘Family’

      Well said Jan. I do agree with you.

      Hope everybody is well during the missing period.


    • Anonymous
      May 10, 2006 at 3:51 am

      Hello, I’m new to this forum.
      I just got back from the Lutheran Hospital in Fort Wayne, Indiana. I left my wife there. Took her yesterday afternoon. Most of the symptoms point to GBS. Today at nine they will try a lumbar puncture to confirm.
      You guys got to help me, we never heard of this symdrome.
      I’m going to bed, to see if I can get one hour of sleep, talk to the baby sitter, and check again this post.

    • Anonymous
      May 10, 2006 at 6:49 am

      Dave and I are back, thanks to Brandy for the e-mail. His nick is the same, changed mine up a little tho.

    • Anonymous
      May 10, 2006 at 7:11 am

      This group has given my family such wonderful support in the days when we were fighting to figure out what in the world my little girl was dealing with. It has helped teachers and caregivers of hers to better understand what she continues to struggle with and to put validity in what she says is going on with her body.

      Thank you for getting things back up and running!

    • Anonymous
      May 10, 2006 at 7:23 am

      Thanks, to the foundation for getting the site up and running. Thanks to all of you for being here. It is great to see things starting again.

      Jfitzen (GBS — Going Beyond Survival)

    • Anonymous
      May 10, 2006 at 7:31 am


      If this site had not been hacked and all the old posts lost, I am sure that any of the GBSers would have been able to point you to the perfect post to describe their illness for you… As it is, we are trying to put things back in order as best we can and often have to start from scratch… I hope that someone may be able to point you somewhere to look for the answers to all the many questions I know you must have about GBS…

      Hope your wife recovers soon…
      (CIDP diagnosed August 2005)

    • Anonymous
      May 10, 2006 at 8:15 am

      Benjamin – do not hesitate to ask anyone any questions. I was diagonsed this past July and was very confussed when I finally made it back home….these guys are the best at not only answering questions but reaching out and making you feel part of a family.

      Best of Luck

    • Anonymous
      May 10, 2006 at 8:40 am

      Benjamin – I am so sorry your wife is ill. I hope the tests provide you with a firm diagnosis soon. What are your wife’s symptoms? Has the doctor talked to you about IVIg or plasmapheresis treatments if it is determined to be GBS?

      We will do our best to give you the information you need – just ask your questions. If it is GBS then it will take time for your wife to recover but the good news is that most people do. There are also many caregivers like yourself here and they will be able to provide you support and offer good advice.

    • Anonymous
      May 10, 2006 at 10:00 am

      Benjamin, sorry you wife iis ill. I noticed that the link “About GBS” on the GBSFI home page points to the wrong information, CIDP instead of GBS. But here is a link to GBS info on the UK site. [url]www.gbs.org.uk/info/gbs.pdf[/url]

    • Anonymous
      May 10, 2006 at 10:32 am

      I’m glad that the forum is back running Did it come down with a case of GBS or CIDP LOL!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!:p :p :p

    • Anonymous
      May 10, 2006 at 12:17 pm

      Hi Benjamin,

      Welcome to the forums. When you registered here did you request the booklet they offer? It gives you an insight into this crappy syndrome and what to expect, also tells you about treatments. First I must tell you there is no cure for GBS, only treatments that stop the damage to the myelin, that is the coating surrounding the nerves. Hopefully the Drs will start her on a treatment of IV immunoglobulins for 5 days or Plasmapheresis which is a little more intense treatment that some don’t tolerate to well.

      She more then likely will have intense pain from the nerve damage. That could take years to go away. Then we have others who bounce back fairly well. Around here “GBS” stands for “Get Better Slowly”

      There are so many things that can happen, such as having trouble swallowing, no appetite,not wanting to be touched because of the intense pain, not wanting any bed sheets or blankets touching her body, just alot of things that most people don’t experience.

      Just ask away any questions, we will be here for you and your wife.

      Wishing your wife the best.

    • Anonymous
      May 10, 2006 at 2:09 pm

      [size=”5″]verry Glad To See The Forumn Up And Running ! After All Its Where I Met Ellen And Debi ,,ect… Great Family And Friends!:) [/size] survivor 48

    • Anonymous
      May 10, 2006 at 2:13 pm

      Dear Survivor 48:

      It’s great to see you back on board. We lost a lot to the hacker, but so far everyone has been real positive.


    • Anonymous
      May 11, 2006 at 2:46 am

      Well said Jan!

    • Anonymous
      May 11, 2006 at 7:53 am

      Hi everybody. It’s been too long. It’s great to see a bunch of the old regulars back and some newbies too. I hope that everybody has been taking care of themselves.


    • Anonymous
      May 11, 2006 at 11:15 am

      Welcome back Val. Good to see you.:)

    • Anonymous
      May 11, 2006 at 5:24 pm

      Hi Everyone!!!

      I am back! Nice to see you all again. I am getting ready for my son to graduate high school! Mike & I are also getting ready to buy a new home this summer…..lots of fun & good things happening here. I hope all of my old pals are doing & feeling great. You all are always in my thoughts & prayers.

      Take Care,

    • Anonymous
      May 11, 2006 at 8:55 pm

      Dear Dawn~Lynn:

      Welcome back you reformed mad posting fool. It’s good to know you are back with your GBS family.