New to Forum – Have GBS

    • Anonymous
      March 19, 2010 at 11:48 am

      Hello Everyone!
      My name is Lee Ann. I came down with GBS on Feb 2, 2009. We were in Mexico when the symptoms decided to rear it’s uglieness…. I was fortunate enough to get back home to Seattle, WA and went immediately to the Emergency room where the doctor knew the signs, did a spinal and put me in ICU. I stayed there for 3 days and then moved to the regular floor. Once I got done with the Gammagobulin 5 days later I was moved to the Rehab floor. I got to come home on March 3rd. I then was in physical therapy 5 days a week for 7 months. Boy what a challenging time that was. I got to go back to work full time on Oct. 1st. I still get very tired but I listen to my body. That is the most important thing to do during the healing process and after. I used to get 4 to 5 hours of sleep, now I require 9 or more. I am very Thankful for my husband, physical therapists, neurologist, friends and family for all of the love and support that everyone has given me through this trying time. I never thought in a million years that I would have to relearn to talk, walk, dress, shower, feed myself, drive, write, type. It has been a life changer. I have made some wonderful friends thru this and I cherish everyday! Thanks for letting me share my story.;)

    • Anonymous
      March 22, 2010 at 8:00 pm

      Hello Lee Ann,

      You were truly blessed to have received a diagnosis and treatment by knowledgeable health professionals. Though I know therapy was grueling, wasn’t it an awesome feeling every time you accomplished something? 🙂

      I’m happy that everything has worked out well. As you said, it certainly is a life changer. After dealing with such a scary illness, I definitely learn to never take anything for granted.

      Take care,


    • March 22, 2010 at 10:26 pm

      Hi Leann,
      Glad to hear you have come so far and had a good support system. You are lucky to have had a good doc to dx you right away and a great husband to support you!!

New to forum, have GBS

    • Anonymous
      November 13, 2006 at 11:36 am

      Hello everyone,

      I’ve learned much from reading posts here for a few days. I got GBS on Oct. 21, 2006, and was in the hospital for 2 weeks, I had the IVIG treatment for the first 5 days — one bottle each night (how much does it cost per bottle on average….just curious?).

      I seem to have had a moderate case based on others’ cases here. At the worst point, I couldn’t move my legs, my arms and hands could move but were very uncoordinated and weak, my bowels stopped working properly, and I needed oxygen one day.

      Now, I’m home and doing better. I still have a tingling sensation all over except for my head. My hands still are somewhat shaky too. I’m doing therapy by myself at home (did it at the hospital first for about a week). I’m on Cymbalta, Lyrica, Celebrex, and amitryptiline (sp?). After reading about side effects and withdrawal suffering, I cut the Cymbalta down to half the dosage yesterday.

      My main concern (since I now know GBS means “get better slowly”) is my left hand. I’m typing only with my right hand now (used to type at over 50-wpm, but no more), and it’s really hard and drins energy to type. I can close my left hand but not open the fingers or thumb. While in the hospital in my worst days, they would move me form lying on my back to either side while sleeping to avoid bedsores. One night, I ended up sleeping on my left arm, so my neurologist says I got Radial Nerve Palsy. Has anyone here had this as well, and if so, has it gotten better?

      I also see many people here getting disability. I wonder if my case would warrant that? I am self-employed and work from home. In my business, I have to use the internet (e-mails, etc.) extensively. It’s taking me over a half hour to write this message when it would normally taken only 5 minutes or less. So, would this impairment count in my case? Or, would I have to wait longer first before applying to see if my left hand will start to work again?

      Thank you very much for all your messages here — it’s good to know I’m not alone.


    • Anonymous
      November 13, 2006 at 11:49 am


      Sorry to hear you have joined our “family”, but glad you found us.

      The radial nerve problem should go away with time. You may or may not have some residual problems after you heal.

      You are still quite early in your recovery, although it probably doesn’t seem so to you right now.

      It takes quite a long time to get SS disability benefits started. I would suggest that you start the process now. You can always stop it, if you recover completely.

      There is quite a lot of paperwork to do to apply. Before applying, I suggest that your first step be to go online and read everything on this site that you can about what constitutes disability according to SS admin. Read the section for the applicant as well as the section for the doctors. You should also read the section about going back to work and how that effects your benefits.

      Best wishes for your quick recovery,


    • Anonymous
      November 13, 2006 at 1:50 pm

      Greetings Steve,

      So sorry you found us… but a big welcome to you as you may get to know us like a second family. Whenever you are down (or up) we are here for you. Seeing that you are only a few weeks into the healing process, you do have a long, long road ahead of you. But remember, you are not alone now!

      I had what some might term as a mild case, and here I am almost 10 years later having fatigue/exhaustion problems. The acceptance phase of this illness is taking me years. I recently went back to my therapist (mental) of 20 years ago and he thinks I should be on disability. I can only wish, but with knowing how long the process is and you have to go 6 months without getting any pay to qualify, well, I just can’t do that. But it was so gratifying to hear someone acknowledge my condition. I can walk pretty good, but as I said earlier, fatigue and exhaustion set in so easily. So, I do agree with get started on disability now – I started it once then backed off and I so wish I had followed through.

      You are probably still used to sleeping alot – get used to it. That is one thing that helps us all so much, is REST, REST and more REST. Since we tend to deny our disability, we tend to overdo things very easily. Please try to learn from us. Hopefully you are reading tons of our past threads.

      Oh, you probably read my thread about Cymbalta – eeks… so very scary. I am back on Paxil and amitryptiline and these old meds seem to help so much better. I’m glad to hear you are going to come down on the Cymbalta – be careful with it.

      Let us hear a little more about you – okay, inquiring minds… where do you live, married?, children?, pets?, etc. etc. 🙂 Some do say I am nosey, but I am really just very friendly!

    • Anonymous
      November 13, 2006 at 5:49 pm

      hi steve & welcome,

      the total amt of ivig you should have gotten is 2.0grams/kilo of your total body weight. unless they make the bottles much bigger i wonder if you got the right amt? ivig treatment costs vary, but at a hosp $10k to $35 k is a good starting place. you are on a cocktail of meds & i wonder why. RU in that much pain? unlikely the celebrex is doing any good. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 13, 2006 at 8:03 pm

      Hi Steve,

      I was wanting to answer your question about how much IVig cost, but I decided that I would let someone else deliver the blow …. 😮 . Going back to your meds .. I agree with what Gene said about meds, I am also wondering why you are on Cymbalta and Lyrica? I am on Cymbalta for neuropathy pain, but that is what Lyrica is for too. Is the Cymbalta maybe for depression, and if it is, maybe you shouldnt go off it quite yet. If it is for neurophathy pain, I may be wrong here, but I would have thought that if the Lyrica agreed with you, then maybe the Cymbalta would be sort of ‘nul and void’, or visa versa.
      As for your recovery, you really seem to be doing wonderfully, even though you may not think so (and may possibly be cursing me at this very moment 😮 ). You really DO have to give it time, as no matter how ‘mild’, and that is a term I use lightly because I really dont feel any case of GBS is mild, you have had GBS, it is a devestating, life altering syndrome, and takes a great deal of time to get to a point where you feel halfway normal (in most cases that is).

      Wishing you all the best.

    • Anonymous
      November 13, 2006 at 8:09 pm


      I just finally won my SSI case after 3 years. I encourage you to explore the process and begin it even if you aren’t quite sure. The pace at which you will actually begin receiving any benefits can be sooooo slow. If you look into it and see what might be required you can be prepared, especially as a small business owner. If I can be of help just let me know.


    • Anonymous
      November 14, 2006 at 8:24 am

      Hi –
      I had a moderate case of GBS too, in february. 2 weeks in hospital, 3 days in ICU, no ventilator, and was able to walk albeit slow and painful through the whole thing. I thought about ssi and was encouraged to apply, because no one knew how long it would take me to recover. However I am glad to report I am doing very well, back to work 3 days week, and will return to 5 in January. I am also raising two young boys. As long as I dont overdo my strength training and overexert myself I am fine. So needless to say, ssi says you must be not expected to get better for a year plus, and my original application was denied (but I expected that). since i did get better, I will not appeal, as I feel up to my job, and I cant afford to not work waiting for my appeal hearing. Anyway now that I am back to work I picked up a few of AFLAC’s plans, which are real nice. That way, just in case there are medical problems in the future, I will not have to worry about where the money is going to come from. Anyway, good luck to you and wishing you a speedy recovery.

    • Anonymous
      November 14, 2006 at 12:02 pm

      I am wondering if anyone has gotten this GBS from a bacteria called Campylobacter?

      Last week my 6 yr.old went into the Hospital, having seizures temp was 103 and 104. He was put in ICU for 4 days. The doctor’s had to really study him and they came up with this Campylobacter, and according to my research, GBS, is connected to it. Is there anyone who can clue me in on this, things to look for ect….


    • Anonymous
      November 14, 2006 at 6:03 pm

      Campylobacter is usually linked to chicken, and yes can make you sick w/GI symptoms, fever etc. Campylobacter is linked to GBS. However many other bacteria/viruses can also set off GBS, as well as vaccines etc. If you would like you can PM me, I was an RN student when I got sick. Maybe I can be of help.

    • Anonymous
      November 15, 2006 at 11:14 am

      Hello everyone,

      Thank you for all of your replies, welcoming, and info.

      Regarding all the meds my Dr. prescribed, no, I really don’t have much pain or discomfort, nor am I depressed. So, all I can figure is that he prescribed them all based on some pain issues I had over 3 nights in my hospital stay that I did have some severe pain (mainly due to the air matress they had me on that didn’t have good support). I finally got the doctor to change the matress to a different one after 3 sleepless nights with pain. But I did have (and still do have) some pain in my left forearm, which is the arm with the radial nerve palsy. Anyway, I’ve been on half the Cymbalta for a few days now and don’t notice a difference — thinking of cutting it down to one per day now.

      Oh, by the way Jerimy, [COLOR=”Blue”][FONT=”Comic Sans MS”][B][SIZE=”5″]GO BLUE![/SIZE][/B][/FONT][/COLOR]

      I do have one question for everyone: how long did it take for you before the tingling sensations left your body (or did they)?

      Best wishes to all,

    • Anonymous
      November 15, 2006 at 11:25 am

      [QUOTE=Mic]I am wondering if anyone has gotten this GBS from a bacteria called Campylobacter?

      Last week my 6 yr.old went into the Hospital, having seizures temp was 103 and 104. He was put in ICU for 4 days. The doctor’s had to really study him and they came up with this Campylobacter, and according to my research, GBS, is connected to it. Is there anyone who can clue me in on this, things to look for ect….

      I ate some shrimp that was steamed and evidently one was bad. It was campylobacter that triggered the GBS almost one week later.
      I have a mild case and am 7 months since April 2006. I still have leg pain and walking is a problem. My hands and arms are stronger and I hope my legs and feet get better soon. F.

    • Anonymous
      November 15, 2006 at 6:03 pm


      no one knows how long any one gbser will take to make a change. you might consider dumping the meds one at a time & see if pain cuts in. dump in this order celebrex [unlikely it is doing anything for you], cymbalta, lyrica, & lastly amitriptiline. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      November 15, 2006 at 7:11 pm

      Steve your a Michigan fan, I like you already 🙂

      The tingling has never really left for me, the Lyrica now and Neurontin before have helped keep the pain and tingling to a minimum.


    • Anonymous
      November 16, 2006 at 2:42 pm

      Hey guys – I was born in Grand Rapids, Michigan!!! Would love to come visit some day (and may when my aunt dies).

      Steve – I am almost 10 years post and still have all the strange sensations. When I get real tired, my left arm goes numb… I know, oh joy (NOT).

    • Anonymous
      November 16, 2006 at 3:25 pm

      Chrissy I am on the other side of the state but if you ever come visit let me know and I will come and meet up for dinner with you guys or something.