How do

    • Anonymous
      August 24, 2008 at 7:34 pm

      the doctors think you got GBS?
      I had a gastro intestinal virus New Years Eve and started symptoms on January 11. I assume thats what triggered mine.
      Just interested to hear.

    • Anonymous
      August 24, 2008 at 8:52 pm

      Carolyn,
      I had a gastorintestinal track infection about 6 wks. before the onset of my sympotoms. A flu shot in Sept. But they believe it was probably the gastro. But who really knows
      I was thrilled to see you are on your feet & taking some steps. That is wonderful. I walk but with a rollator. But at least it is walking. NO balance to walk by myself.

      Keep up the good work, but don’t over do!!:rolleyes:

    • Anonymous
      August 24, 2008 at 9:40 pm

      crlyn I had my teeth cleaned exactly a month before my onset and that is usually the time frame they tell you to go back is one month. My team of doctors think mine was a sinus infection that I ignored and it got better before I called the doctor for meds. There are so many things it could be and most do not really know what infection they got to bring down their immune system to let the GBS take its course. Sounds like you are really doing well so early in your illness. Keep working and never give up on the rehab. Just this Summer I had some really good progress in my healing and ability to do much more this Summer. Keep up the good work and be safe and there is nothing wrong with using a cane when you are tired like I do or using the walkers or rollator or a wheel chair for assistance to let us gain more freedom in our lives. There are so many aids that I used during my recovery. I wish I could find the inventors that did such a good job in working on an idea to let us gain more freedom. I send them and our caregivers many thanks and much love! The teams of Doctors and Nurses and Aids and hospital staff and rehab staff that made our progress possible. THANK YOU ALL! They were all good at finding what worked for my and my recovery and still are working with me!

    • Anonymous
      August 25, 2008 at 7:56 am

      I have the CIDP but not yet diagnosed as having the GBS but may have had it years ago. Gosh! This is kind of scary when we mention the trigger factors. Even with my CIDP I have problems everytime I get some kind of infection. When Kitt mentioned getting her teeth clean that reminded me of getting a back molar pulled a few years back and I had a mild onset then of something. Took me about 4 weeks to recover from that.
      So now I am afraid of getting sick now! 😀 Everytime I do, something else pops up! Hope to see you recovering soon and it’s a pleasure meeting you. Strange how just a simple virus can do so much damage.
      I’m just curious but once you get GBS the first time can it come back again?

    • Anonymous
      August 25, 2008 at 10:03 am

      Thanks for the well wishes! I had a mild case of GBS when I was 8, so about 22 years ago. This time it wasnt mild!!

    • Anonymous
      August 25, 2008 at 10:12 am

      So does this mean GBS can come back over and over again? Or maybe mild then you can get hit hard one good time with it. That would give me alot of worries to think about if it comes back with it having the side effects it has. Scary stuff! Really scary!

    • Anonymous
      August 25, 2008 at 11:02 am

      Linda I sent you a private message. But to get GBS a second time is very rare and I don’t ever remember anyone here having a third case. But CIDP is different it is the cronic form of GBS and it never goes away. it is only maintained to give people a qualilty of life. Usually it gets compromised with other autoimmune illnesses too.

    • Anonymous
      August 25, 2008 at 3:58 pm

      [QUOTE=LindaH]So does this mean GBS can come back over and over again? Or maybe mild then you can get hit hard one good time with it. That would give me alot of worries to think about if it comes back with it having the side effects it has. Scary stuff! Really scary![/QUOTE]

      It is sooooo rare to get it a 2nd time. Lucky me….

      I am scared to death of getting it a 3rd time, I really wish more studies could be done about GBS!!

      It really is a scary syndrome!

    • Anonymous
      August 25, 2008 at 6:52 pm

      So sorry what you have had to go through. Having it two times, I too would be afraid of it happening again. I hope that you get better soon and hope you never ever have to see this disease ever again. Meaning you had it twice to never get it again and you get well soon. I have Systemic Lupus and deal with Flares alot and that too is agrivating to have. I deal with pain alot. Then this CIDP kicked in and now I am dealing with two issues instead of one. Not easy either. Glad you posted this and just want to wish more better days ahead.

    • August 27, 2008 at 10:38 pm

      I had the campylobacter jejuni bacteria. I had eaten in a restaurant and the doctor’s therories were that there had been some cross contamination from unclean working surfaces, since I had not eaten chicken. I had also had a kidney transplant in May of 2001 so my immune system was suppressed—which did not help!

    • Anonymous
      August 27, 2008 at 11:20 pm

      I have chronic sinusitis. Sinus infections, Sinus surgeries, 11/05 & 10/06, on many antibiotics. Just before dx with GBS, 6/11/07, I had been on two high doses of Cipro and Biaxin because of the bacteria cultured from my nose. Stress is also supposed to trigger GBS. I had been the caregiver for my mom who has been battling cancer since 2002. Trying to work full time for a boss who has Altzheimers and take care of my own family…yeah lots of stress. But no one is saying that any of this caused the GBS. Some visitors at the hospital said this was God’s way of telling me to slow down…I would have taken a smaller hint, haha:D . Best wishes to all.

    • Anonymous
      August 28, 2008 at 10:28 am

      I was pregnant with my daughter and contracted viral hepatitis. The doctors think I got the hepatitis when we went on vacation to the beach. Anyway, that was my link to this wretched disorder.

    • Anonymous
      August 28, 2008 at 10:43 am

      Enlisted in the US Army in March of 1988. Was given the full variety of vacinations at the time of induction.

      Was sick with 2 to 3 weeks after that. Can only be explained by the vacinations.

      Chris

    • August 28, 2008 at 3:03 pm

      I had been dealing with a prostate infection for a few weeks, caught the flu and that’s when it started for me.

    • Anonymous
      August 28, 2008 at 7:32 pm

      I had flu like symptoms while in the city with my son. He was in the hospital having his tonsils out and his adnoids removed. I got flu like with black tarry diarrhea, severe headache, high fever, weakness (all symptoms of campylobacter), but I did not see a dr. at that time so no connection to C. was made. I do think that is what I had though. We live on a farm and drink well water, raised and butchered chickens, cows, pigs. All things that can be linked to the bacteria.

    • September 5, 2008 at 2:22 pm

      I got it two times with one year between, it maby was relaps but I was on IVIG the second time too. and the doc said please not more of this 😀 enough is enough, Im the first pathient in Iceland that have been having this 2 times, but then we are only 300.000 that live in Iceland;)
      xoxooxooxoo

      [quote=crlyn324]It is sooooo rare to get it a 2nd time. Lucky me….

      I am scared to death of getting it a 3rd time, I really wish more studies could be done about GBS!!

      It really is a scary syndrome![/quote]

    • Anonymous
      September 5, 2008 at 7:09 pm

      [QUOTE=tofraljos]I got it two times with one year between, it maby was relaps but I was on IVIG the second time too. and the doc said please not more of this 😀 enough is enough, Im the first pathient in Iceland that have been having this 2 times, but then we are only 300.000 that live in Iceland;)
      xoxooxooxoo[/QUOTE]

      Helga,
      Was the 2nd time worse than the 1st?

    • Anonymous
      September 5, 2008 at 7:33 pm

      I admire you all being so strong the way you all are after going what you all have been through with this disease or illness! Makes me wonder if it has something viral involved that triggers it. Bur I give you all great admiration for dealing what you have dealt with. I know this had to be a fight to get your lives back and some of you are still not the same as you were before you got sick with this stuff! But I call you a fighter for getting through this. I know mentally and physically it had to have been hard waking up to and not being able to do for yourselves. And then have to struggle to get back on your feet! It takes alot of will power! And each of you sound as if you all had that! So proud of you! I really am!

    • September 6, 2008 at 6:04 am

      much milder, I did not paralized then I one was weak in all limbs, I think how quickly they gave me the IVIG saved me.
      xoxooxoxo

    • Anonymous
      September 6, 2008 at 6:27 am

      Hi Helga! So glad you are doing somewhat okay! Those weak limbs though can be very disabling and gaining strength is hard doing! Pleasure to meet you in here. It’s been so nice meeting everybody in here. Each one of us has a different story to tell and thanks to this forum, we are not alone and can share our experiences, shed our tears and get understanding that we need when we need it! I hope you get much better soon. Cyber hugs!

    • Anonymous
      September 6, 2008 at 6:50 am

      Had some undercooked KFC chicken. then got a cold with lingering cough. Had open heart surgery and three days after coming home from that was paralyzed with GBS.

    • Anonymous
      September 6, 2008 at 9:32 am

      Wow, we are definetely all fighters!!
      I wish there was more awareness about GBS/CIDP

    • Anonymous
      September 7, 2008 at 2:46 am

      My doctor thinks it came from living in a house with black mold and working where I had to clean with chlorine water (allergic to chlorine).

    • Anonymous
      September 7, 2008 at 6:52 am

      Hi Craftlady! That is so strange about the clorine water. I too get sick everytime I smell it! It’s makes me get high feeling. Tilex for cleaning bathrooms has a really strong smell and I can’t even tolerate that. I now use the old time Mr. Clean! But I like the lemon scented kind. Bleach just gets me so high feeling. After I smell that I get all dizzy and woozy and start acting weird like I am high on a drug. So I had to stop using it! But that is strange how you too had the clorine reaction! This site gets very interesting. It’s like we all have our own stories to tell! But is very useful in helping others in here in need! Thank-you all for sharing this information!