GBS/CIDP Foundation International Annoucement

[B]When my husband was first diagnosed I already knew about GBS/CIDP because I work in the medical field and also had a friend who was DXED with it years before Frank was. I didn’t know the depth of complications and residuals GBS/CIDP until it happened to Frank.[/B]

I know I am in your database. Why am I not receiving all that you say I should be getting?

Ron:confused:

Hello Ronald,
Did you join the foundation itself by going to the main page gbs-cidp.org and registering or did you just register for this forum?? You’ll get all the information when registered with the foundation, which you should do first, then join the forum. Call them.

Ron,

In addition to registering for the forum, you also have to register with the foundation here [B]gbs-cidp.org/contactus.htm[/B] (cut and paste into a browser)

Jerimy

Hi, this past few weeks beencrazy- I was diagnosed 3 weeks ago with GBS. I had heard of it, mainly from others a lot worse than i am. From there information when I lost my feeling in my hands and feet I knew enough to get to the ER. Luckly the Truama Doc had delt with it in the past and got me started with the right help. I spent only a week in ICU and another week in a ward. I have gotten all feeling back but dont have much strentgh built up. Getting pretty fustrated with it all ready, I am a firefighter and avid cyclist so its hard to sit. sorry for rambling, I enjoy hear others journey of this syndrome and realize i am not bad off and I have a huge respect all of yall.

Hi Dane, Welcome to The Family. Feel free to ask any question or just vent when You need to. 🙂

Dane,

Welcome to the family, hope to get to know you better. Take care.

Jerimy

Hello my name is jim i got sick in aug 05. it wasnt bad case only in hospital 2 days. and it took 3 months to even walk good enough for cane. and even longer to write. so im very lucky .have had lot of set backs but still try. i use exersize bike and treadmill when able. got .50 on bike and.25 on tread at 2.0miles hr some times i lift my dumb bells 15lbs each but when i do i pay dearly but i go right back to it. cause i want life back.but noticed muscle demilination to. my doc said i have demilination in nerves and muscles with mild case i dont get why it disabiled me. i have stenosies in neck and scolyosis in back and didnt no until after this happened .i dont get it but im fighting it as best i can. for wife an kids i just wish disablity would hurry up so i can breath again.but just wanted to hello and hope to find friends who understand all the whys and why nots.:Dbeen fighting disabiliy since doc said i cant work in 05. and had lawyer sence 06.and still waiting and hurting physicly and mentaly .its rough guys but with gods help and you guys we can GET UR DONE.

[QUOTE=Dane]Hi, this past few weeks beencrazy- I was diagnosed 3 weeks ago with GBS. I had heard of it, mainly from others a lot worse than i am. From there information when I lost my feeling in my hands and feet I knew enough to get to the ER. Luckly the Truama Doc had delt with it in the past and got me started with the right help. I spent only a week in ICU and another week in a ward. I have gotten all feeling back but dont have much strentgh built up. Getting pretty fustrated with it all ready, I am a firefighter and avid cyclist so its hard to sit. sorry for rambling, I enjoy hear others journey of this syndrome and realize i am not bad off and I have a huge respect all of yall.[/QUOTE]
YOURS SOUNDS LIKE MINE DID.BUT AFTER 3MONTHS I WENT BACK OTHER WAY.AN NOW HAVE NEROPATHY AN PERM NERVE DAMAGE. AN ON PAIN MEDS TO HELP WITH PAIN.BEEN SINCE AUG 05 SO DONT GET IN HURRY TAKE IT SLOW NO MATTER HOW HARD IT IS NOT TO GO SLOW SO YOU DONT RELAPSE GOOD LUCK PRAY YOU DO HAVE FULL RECOVERY THANKS JIM.

hmmm… how about you send everyone who has subscribed to this forum,,,, a e-mail!

Hey, you could ask them to opt-in to a quarterly subscription or , for that matter, you can send the digital version to them and include a link at the bottom for them to OPT out!

Additionally, I’d suggest online surveys, so you can get a feel as to what participants feel is important concerning this site and foundation directions. This would promote…are you ready… a sense of participation! Do a semi-annual survey via the BBS (a complex poll) as a part of SOP.

I’d also suggest you send forum members links to important topics, such as the need for political activation… or this thread for that matter; this is commonplace with any participating member of a group online, wonder why you folks don’t do it?

In fact, all I ever receive from this BBS is a notice that someone hit a thread I was following, which is fine, but , again, there is greater potential than what I see realized. 🙁

Glad this foundation was there. I found after a little research I knew more than my neuro. And all from this site.

New here to. I will go back and make sure I’m signed up. I think I am though. I have been on a whirlwind with this as I am athletic and ran and never stopped and now I can’t walk some days and shuffle in pain the rest. They are still not sure what is wrong, but they are leaning with CIDP. Had two rounds of IvIg and I get better, but slide back after just a couple weeks. Busy mom of two kids under 5 and run a business from home, but dealing with this is the most challenging thing I’ve ever gone through. Looking for friends and support!

Melissa