Welcome Back Everyone
AnonymousMay 5, 2006 at 9:56 pm
I would like to welcome you all back to the forum. I missed you all and I am glad you will be coming back. I really see that I was taking these forums for granted. It’s just like the lessons you get with GBS. You can’t really appreciate something until it is taken away from you. Anyway, I hope this pause will give everyone an opportunity to cherish everyone in our GBS community (even those people we had a tiff with).
We all lost a wealth of information when this site was hacked. I hope everyone will pull together and do what needs to be done to rebuild as quickly as possible. I hope nobody will be shy about resubmitting some of the best posts from the past.
Anyway, I would like to thank the site administrator for getting this site up and running. The new look is certainly an improvement. I am sorry we lost so much data. I can only imagine how difficult a decision it was to scrap the old forums so that we could at least get something going again.
AnonymousMay 6, 2006 at 10:34 am
What a great surprize to find this forum up and running! I had just found this forum when it went offline. Glad that someone has done alot of work to get it up and running! CONGRATULATIONS and WELCOME BACK! To those that come here looking for information on Guillain Barre Syndrome and some of the other things we have covered but have lost. I hope that our members start some good informative threads to guide and encourage others that have just found us to come back often! I am looking forward to adding when I can and reading all the great posts that also contain the things that I just can not put into words. Just coming back after my onset of GBS in November 2005 I need this kind of support, information and a place where I can come to ask questions that have been on my mind.
GBS onset 11/05
AnonymousMay 6, 2006 at 10:52 am
I am still trying to find my way around here. On the old forum we used to have separate sub-forums, one for GBS, another for CIDP and a third one for chat. On the UK forum it was decided to keep GBS and CIDP together. The argument was that there are commonalities etc. I kind of liked it that way. Important is IMO that everbody identifies what they have in their signature.
I just posted on the UK forum and expect people to show up here any minute:) 🙂
AnonymousMay 6, 2006 at 11:15 am
Dear Norb and Kit:
Norb, I think that this forum will have to be partitioned into sub-forums, otherwise retrieving information will be impossible. It looks like they got the forum back up, as a necessary first step, and they are going to worry about everything else in the near future. I am not 100% sure that all the old data is lost, but we shall soon see.
AnonymousMay 6, 2006 at 12:59 pm
Where have you been folks? Norb and LadyKit have been having a whale of a time on the UK forum, as have many others.
It may be worth you visiting [URL=”http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi”]http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi[/URL]
Read all the topics there over the past 3 months or so. A lot has been going on in the various parts, both serious GBS/CIDP/PDN and also fun such as The Tavern.
Agreed Norb? Perhaps you will advise on the PDN bit?:)
AnonymousMay 6, 2006 at 1:25 pm
Hi GBS Friends::p
Wow, big change in the forums! I don’t come on here too often, in fact, I think “Lee” is the only person I recognize…..Hi Lee….how are ya?
I recognize Kens & Norb from the UK site – I peek in over there too – we will have to visit the UK site now and again, they’ve been so gracious and helpful while this one was down.
Glad to see we are up and running again….take care and will see you round and about!
AnonymousMay 6, 2006 at 2:18 pm
Hi family and friends,
BOY, I’m going to have to re-learn how to use this. I already noticed the time that I have showing is wrong. I put in a profile, but I have to figure out what else I need to do.
I couldn’t get my old status back, even though I had my username and password. I had to register as a new member, but that’s okay.
We’ll just have to send out word to everyone and anybody we know that the US forum is back.
WELCOME BACK EVERYONE,
from my heart,
May 6, 2006 at 2:32 pm
Thanks Nobert for letting us know the US forum was back up.
As I recall the GBS forum was about 4 times as busy as the CIDP folks. I think it is important for the newly diagnosed to be able to get their illness specific information and support as quickly as possible – so I am hoping the administrator is planning to set up separate forums. Plus a social forum where we can all participate in non illness chat.
The people on the UK forums were very gracious but it is nice to be back “home”,
AnonymousMay 6, 2006 at 3:40 pm
Hi everyone I am glad to be back I checked the site last night and it wasn’t working and where you can order stuff from their store the certificate for securities was for another site. So they might still have a few things to work out. Also on there main page if you click ABOUT GBS it leads you to the CIDP OVERVIEW instead of the GBS OVERVIEW but on any other page the link works fine.
PS: The time zone settings are all screwed up. I set it for Eastern Canada -5 hrs and the time is off by 2 hours I had to change to it to -3hrs from some other part of this world to get the correct time.
AnonymousMay 6, 2006 at 4:52 pm
I was surprised to see the forum up and running again. I definately missed the support from the GBS/CIDP community. I only just found the UK community after being out of touch since this site went down. It is good to be back and I will try to participate more often.
GBS Diagnosis 5 Dec 05
Virginia, USA (for 54 more days and then New Mexico)
May 6, 2006 at 5:01 pm
Oh! I am glad to be back! I really enjoyed the UK forum but, this one has info on US docs, hospitals etc.
Sorry all our profiles, back information, etc. was lost but so happy to be “home”.
AnonymousMay 6, 2006 at 6:31 pm
I also agree about the partitions… It makes for smaller forums with seperate threads as well…
And I also want to thank Norbert for the “heads up” on this site being back… I checked here before going to the British site and the main page gave the same-old-message, so I thought that nothing had changed… I am really so happy to have this back in whatever shape it takes… It is indeed good to be home… 🙂
P.S. How is everyone doing anyway…???? So we need a thread for updates..??? Also, how do we find those who are “lost” and may need help in their return… :confused:
AnonymousMay 6, 2006 at 6:51 pm
You really asked a loaded question. How DO we find those who have lost their way? I went through all my old e-mail archives and e-mailed everyone I had an address to and I let them know the site was up and functioning. If everyone did this, hopefully we will reach a large number of people. Since the URL hasn’t changed, I guess we need to hope people will check in sooner or later.
The thing that I am worried about is that a lot of long time posters, like Jethro, Gene, and Doc David will feel that they said there bit and don’t post as much as they used to. If they don’t re-post some of their best posts, that will be knowledge lost. We don’t need to replace all 120,000 lost posts, of course, but there were many extremely important posts that I would hate to see go.
If anyone has any suggestions, I would be willing to do whatever is necessary to keep our community intact.
AnonymousMay 6, 2006 at 7:29 pm
My Goodness!! I am so glad we are together again, well, lets hope we will ALL be soon. I had given up hope and had’nt tried to get onto the site for the past week or so. Thank you Kathryn for calling me and letting me know. Like so many of you, all my information was stored in my forum inbox, and so I lost everything.
I look forward to our daily conversations again!:D
AnonymousMay 6, 2006 at 7:36 pm
Welcome back…was worried since I hadn’t seen hide nor hair from you on the UK or this forum (well yeah this one wasn’t working but you know what I mean). I figure if we all contact those we have e-mails/phone numbers for we can get most of us back up and”talking” again.
Now if we can just get some of that great historical knowledge back…it was really helpful to be able to search on a topic to see what others had gone through. Oh well, maybe we’ll all have to tell our stories again.
AnonymousMay 6, 2006 at 7:47 pm
Cant tell you how many times I have wanted to retrieve the information we had on the old forum. Wish there was some way we could get it back, years of knowledge and suggestions down the drain.
Not knowing much about the internet or the law regarding it, can someone be held criminally liable for destroying a site like this. Maybe Lee or Jer (or whoever) know? How hard would it be to track someone like this down?
AnonymousMay 6, 2006 at 8:03 pm
There was a member of the forum named Paul who worked for the Canberra, Australia Constabulary. He was excellent at tracking down the backgrounds of some of the snake-oil salesmen who came onto this site. He would be the one who could track this guy down, if anyone could.
There are laws against computer hacking but having this guy go to jail might be doing him a favor. Jail might be the only chance he would have of getting sex in his lifetime.:eek: Sorry but I am still pretty angry over all of this.
AnonymousMay 6, 2006 at 8:14 pm
[QUOTE=Jerimy]Honey I’m home[/QUOTE]
Hey, that’s cute, Jerimy. I like it. As far as holding someone liable, forget it. The hacker won’t do us any good even if he did get caught.
A short while after the forum went down, it came up again with posts and all but without the avatars. Shortly after that it disappeared again. This tells me that there was some kind of backup. But to import all the posts from the old forum into corresponding threads in the new one is – from my years of experience with software – a huge undertaking. It would take a lot of programming expertise and not only that but access to the internals (file layouts etc.) of both systems plus access to each server. I seriously doubt that there is an interface already in existence between the old and the new forum.
Looks like we have to start all over. I just hope that people like DocDavid and Ken feel up to posting answers all over again when certain topics or questions come up.
AnonymousMay 6, 2006 at 8:14 pm
I am pretty peeved about what happened. Wish we could find Paul to see what he could do. I think its just my prayer at the moment to get everyone back again, maybe someone will take it on as a pet project to “hunt the hacker” down. I think we could all think of ways to punish him. Im loath to start a thread asking for suggestions to punish him, he would probably laugh and feel powerful should he get to read it. Who knows, he probably wont read it, cause he has moved on to mess tons of other things up.
AnonymousMay 6, 2006 at 9:15 pm
It’s so good to see everyone. I think the best way to find our lost members is to post the name of who you’re looking for and if anyone of us knows how to contact them, please do so. I have names/emails/addresses of about 100 of our members from the bracelet sales. I already sent emails to Brandy, Marguerite and Hauts, and will send more out ASAP
It is heartbreaking that we lost all our old much needed posts. If anyone kept copies PLEASE re-post. I remember posts from members who couldn’t get IVIG’s, they need advice on what to do. And medical insurance issues, how do you get your insurance to pay for treatments, and what do you do if you have no insurance, these posts need to be re-created.
AnonymousMay 7, 2006 at 7:41 am
Doc David has been in hospital but is now improving.
These UK links tell the story.His daughter Jane reported:[URL=”http://http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi?s=445de7a72859ffff;act=ST;f=2;t=115″]http://http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi?s=445de7a72859ffff;act=ST;f=2;t=115[/URL]
A few days later – [URL=”http://http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi?s=445de7a72859ffff;act=ST;f=2;t=122″]http://http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi?s=445de7a72859ffff;act=ST;f=2;t=122[/URL]
AnonymousMay 7, 2006 at 8:29 am
Great to see some of the old names back I changed mine for ease of entering “larry” now as opposed to “larry4171956” The new look looks good and I am sure I will get used to it. A lot has been lost with the hacking of the old forum all that info and personal dialogue that helped us through some tough times . Just knowing that it will all start again is very soothing. Hope everyone is doing well and welcome to all newcomers sorry you had to find us, but we area great bunch.
AnonymousMay 7, 2006 at 1:02 pm
Wow I can’t believe all the information on the forums was lost. Isn’t it
amazing how that can happen just cuz someone wanted to HACK the site.
I too want to thank administrators for getting this site up and running.
I haven’t been around for awhile… but always have peeked in to see what
is new…and what’s going on.
Nice to be back on line…. talk about a fresh start!!
AnonymousMay 17, 2006 at 2:31 pm
You never realize how important something or someone is until you don’t have it. Even though I did not post as often as I first did when I came down with GBS I relied on the old site continually for past important information and the comfort of having others who had so much knowledge. I had copied alot of the threads from before and rely on that. Thanks to everyone who worked so hard to get this forum working again. It is so valuable to all of us.
AnonymousMay 17, 2006 at 2:51 pm
I wonder if I could ask a favor of you. Because some of the old threads were important enough for you to copy, I am guessing that they probably have some meaning to others, as well. Would it be possible to open a new thread with the old posts, or maybe you could mail me the old posts and I could post them and make them available to newcomers. I think that would be a great public service contribution from you.
AnonymousMay 17, 2006 at 10:54 pm
Thanks Lee for all the information about the forums that you are posting for us. The posts are very helpful, and then I don’t feel so lost. It sure is great to have our forums back again.
I may not post all the time, but I really need the support of being here and listening.
I, also, tried the picture (avatar) bit. Got my picture down to the right size, but it’s just sitting there.
I know that the site put a lot into getting back up on the web, and the new look is nice; but it’s hard to teach an old dog new tricks. I guess it will come with time.
take care and forward we go…….
AnonymousMay 17, 2006 at 11:11 pm
Thanks for all the posts that help answer some of the questions with the new forum. I don’t feel so lost with you posting and giving directions. I sure appreciate it.
Thank heaven the forums are back on line. I really missed them. I don’t post as much, but I do stop in for support and listening.
I tried that avatar bit too. I got my picture down to 100X100 pixels and now it is just sitting there on my profile. Oh well, they will get that part fixed sometime soon I hope.
It feels strange to be starting all over again. I read your post to the hacker and I loved it. I have some other ideas of what to do with these idiots, as I am sure most everyone has their own little torture in mind.
Take care and Good Luck to us all.
AnonymousMay 18, 2006 at 9:15 am
I had trouble getting my profile picture posted, as well. I would load it and it would do nothing for a real long time and then I would get a fail to load message. After two days of fulminating, I turned off my firewall and it loaded in just a few seconds. You may wish to give that a try.
Do you really collect white tigers?
AnonymousMay 18, 2006 at 9:01 pm
I wish I could. I collect white tigers stuffed, ceramic, pictures, etc. Just an obsession with me. I even had my picture taken while feeding a white tiger milk from a bottle. Their fur is not soft; it’s brisly, at least as a Kitten.
Thanks for the information on the picture problem. I will give it a try.
I noticed that my post entered twice. When I sent the first one, a message came back and said that I had not entered enough words to be used or something like that. Well I made more words; and, when I looked my junior listing with 2 posts, I went back to the thread and saw that the first one did load. Strange, probably a glitch.
After being a senior member, it feels kinda sad that I have to be a junior again. I imagine many feel this way, and I know that we are all in the same boat.
Thanks again Lee,
May 19, 2006 at 2:50 pm
I was alpreusk but registered this time as arlingtonal – Arlington Heiights, IL is home!
We should tar and feather that hacker if we find him/her…..
The Canadian site was good too…but I found it late.
Anyway good to be back and able to help…and to see the familiar names.
Keep on keepin on.
AnonymousMay 19, 2006 at 6:51 pm
Glad to see the group rejoining again. I was so worried through the blackout. I know that there are lots of people reliant upon the group interaction because they are housebound. I sent my thoughts and prayers to you all.
Hey, maybe that’s a new word…the Blackout Period.
AnonymousMay 22, 2006 at 12:48 pm
Oh, it’s great to be back!! How I have missed each and every one of you! As I have wondered how you were, I would say a prayer. After a “blackout” orientation takes a bit of time but we’ll all get there. The most important thing is that “our family” can communicate again! Thank you to all who have made this possible. 😀
AnonymousMay 22, 2006 at 12:55 pm
Not being proud but there was no blackout on the UK forum. Some, even quite a few regular US, Canadian, Norwegian, Swedish and German users were wide awake and became regular users in those weeks.
A visit to [URL=”http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi”]http://www.gbs.org.uk/cgi-bin/ikonboard3/ikonboard.cgi[/URL] and you could trawl through all that was posted in recent weeks, serious and social.
May 22, 2006 at 2:40 pm
I’m not a frequent visitor here anymore as I feel pretty good most of the time but when I needed some free advice from the educated group here I was very disappointed to discover the site down. I actually had to call the doctor only to learn that my suspicion (which would have probably been confirmed here) was correct. I have almost 5 years out and was having an intense episode of nerve tinglies! She said it was just some regeneration which is what I thought it was. Anyhoo, glad the forums are back as I’m sure many folks are encouraged each day by this community.
AnonymousJanuary 1, 2012 at 10:54 pm
Who say you can get enough
football on New Year’s Day
AnonymousFebruary 2, 2012 at 5:42 am
As a long time CIDP’r (18 years – IVIG ea 6 Weeks) I long ago sat down and re-thought how to explain my symptoms to myself and others. I got tired of waving my arms about and trying to expain’weird’ and saying ‘ya know?”. I needed some consistancy so I wasn’t all over the place. Almost everything I have experrienced fits into one of my categories. So, after much thought I decided to reduce my symptoms to 5 categories and leave the latin to the doctors. I’ll leave the details to your experience.
I do think its important to understand the correct meical terminology. I have a copy of Taber’s Cyclopedic Medical Dictionbary that I find indespensible when reading research papers. I was pleased to find that ‘idiopathic did not mean ‘to wander about like an idiot’. I’ve been stuggling with the new format and really haven’t figured it out – yet. Best to all.
AnonymousFebruary 7, 2012 at 8:19 am
Hi ya’ll 🙂 I just now seeing that the forums are back up. I have been checking frequently. But I havent in the last week or so.
When did this come back up, exactly??? Anyway, I am also very pleased that we are back “online” LOL. Welcome back everyone !!!! I too, had to re-register as a new member, but that is ok. Hope everyone is well.
AnonymousFebruary 22, 2012 at 8:35 pm
Hi Everyone!!! I have been checking for a while to see if forum was back up and finally found it today after I re-entered the URL as the old one does not work anymore – it says the forum is still under migration. And how in the heck do we get our avatars back up?
February 22, 2012 at 9:38 pm
NGG – Good to see you back! Emily has decided she’s going to join orchestra next year and play the violin. I could not be more proud of her. (I was secretly hoping she would play the bass or cello though)
Gary – It’s good to see you drop by. I hope things are well with you!
February 22, 2012 at 10:58 pm
I hope you are all as good as can be. The violin will be a great start! Then you can get an electric guitar into her hands when she’s ready to shred!!
Good for Emily!
July 27, 2012 at 8:10 pm
The residuals in my hands have not gone away, but I think I have adapted to the new situation. I may never be up for the two-hour gigs that end at 2 AM (hello fatigue). However, I was still able to get up and groove with some of my middle-school students and colleagues at our annual charity Rock concert.
I’m most proud of this over-the-top rendition we did of Stevie Wonder’s ‘Superstition’. The band teacher put the horn section together and we added clavichord, drums, bass, vocals and yours truly on rhythm guitar. All the musicians here are 13-14 years-old, but put forth the discipline needed to keep a tight Funk groove going. I couldn’t resist working a guitar groove into act and it was a great opportunity to play for a crowd again Never in my life did I ever think I would play to a throng of screaming teenagers. 😆 ) However, there were times I believed I might never be able to play at all. I’m glad I played through the pain to help my hands recover. I’m grateful to those who wouldn’t let me quit and supported me all the way.
Click on the link, then click on play to give it a listen! NOTE: THIS HIGH-FIDELITY RECORDING CANNOT BE FULLY EXPERIENCED WITHOUT EXPANDED DYNAMICS-CRANK IT UP!!!
July 27, 2012 at 9:25 pm
Sorry about the dbl post, I honestly don’t know how this got here!!
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