Home from hospital

    • Anonymous
      July 26, 2006 at 9:08 pm

      Just a short hello. I was supposed to have bladder surgery today so I could start pp. But last week ended up in the hospital with a rupture appendix, and the appendix was dead and gangreen set in, so had a radical surgery and 8 days in the hospital.

      I am on the mend now, but am not on the computer yet. First time/ I have someone taking care of me now as I am not able to attend to all my needs yet.

      Anyway, I will be back when I am feeling better/ It took alot out of me/

      Thinking of you all and will catch up on the boards as I can.

      God bless

    • Anonymous
      July 27, 2006 at 12:00 am

      Take care, Blu… I hope you have a speedy recovery…


    • Anonymous
      July 27, 2006 at 2:17 am

      Welcome back home and keep in touch:)

    • Anonymous
      July 27, 2006 at 6:22 am

      Hi Blu,

      Best wishes for a speedy recovery from your surgery. Hope to see you here soon.


    • Anonymous
      July 27, 2006 at 12:32 pm


      you were going through quite a rough patch for a few moths before the rupture, how are you feeling now after the surgery i.e. how did the anesthetic affect you, was there infection that spread?[SIZE=2][FONT=Verdana] Glad you’re back and on the mend. [/FONT][/SIZE]

    • July 27, 2006 at 12:50 pm


      So sorry to hear of your emergency. Sending prayers for your speedy recovery.


Home from hospital

    • Anonymous
      July 21, 2006 at 9:50 am

      Wow, its nice to find a forum with others going through this.

      To introduce myself, I started having subtle symptoms about 3 weeks ago, which I was lucky enough to notice and be concerned by (wet/cold sensations all over my skin) and ended up in an excellent neurologist’s office by week’s end plagued with the addition of back pain, mouth numbness, and early signs of bell’s palsy (which I had once before, a decade ago in college). My neurologist diagnosed me nearly instantly (I had hoped it was lyme’s disease) with some fear of MS and immediately put me in the stroke ward of the nearby hospital to monitor me while I waited for test results and to hit rock bottom. The back pain was horrific…felt like someone was pulling my spine out.

      So far, I’ve been very fortunate. I have an incredibly supportive husband and mother and friends who got me through the IVIG treatment (the first night of IVIG I spent 15 minutes having the worst chills of my life, thinking I was going to have a heart attack).

      This week I spent 4 productive days in rehab and now I’m home, walking with our without a cane.

      I’m finding hot showers with high water pressure to be a tremendous comfort.

      I’m not sure what to expect at this point. It seems I was lucky in the mildness of my case. The bell’s palsy hasnt passed yet though I feel some progress in that side of my face (I can nearly drink properly), the back pain has mostly subsided. The real pain now is coming from what seems a common complaint here…..pain in my feet and hands. I’m going to try the vaporrub thing I just read about here. I’ve been told cold -> hot is the way to go for the pain. Has anyone tried this?

      I’m on very few meds now, really just a pain killer and lidocaine patches for my back as needed. They gave me neurontin in the hospital but I’m off that now. I’ve been told a drug called Lyrica is very similar to neurontin but w/o the terrible side effects. Has anyone tried this? I’ve been told this could mask the sensations in my hands and feet while the mylin regens.

      Anyway, I think over the next month or so that I’ll be home from work, I’ll visit often.

      My heart goes out to the rest of you going through this.

    • Anonymous
      July 21, 2006 at 11:19 am

      Greetings SIL,

      I’m so glad you found us quickly. To be honest, you have a long road ahead of you, but with the shared knowledge and support here, you will be okay.

      I’m sure others will respond, but from what I know is that pain killers will not help this type of pain. Neurontin, Lyrica or Cymbalta may be of help. I have been on neurontin before and it does help. Now I am on Cymbalta as it helps with the mind for depression and the body for these strange nerve things. One main thing that will aid you the most is lots of rest, rest and more rest. This will also be part of your new life now – more rest.

      I still cannot handle hot water and my neuro said no to hot tubs. So you might be careful with the temp. as maybe you aren’t really feeling how hot it is.

      Let us know how you are doing. 🙂

      P.S. Do a search for the meds and you’ll find lots of info. posted here.

    • Anonymous
      July 21, 2006 at 3:53 pm

      Welcome SIL!

      Glad to hear you are back home again. I do recall the back pain vividly, oh what horrible memories 🙁 . Chrissy is so right about resting, it is soooo important. Make sure you are ready to go to work, I know some of our members actually start off going half day for while before trying to go full day. Wishing you all the best.

    • Anonymous
      July 21, 2006 at 9:21 pm

      Hi SIL,

      My experience shows tiredness after ‘hot’ water bathing. Yes, Chrissy I agree with you I too cannot handle hot water. I have to take rest for about 15 to 20 minutes to come to normal condition after bathing although I have recovered more than 95% from GBS.

      Take rest and do PT under the guidance of experienced Physiotherapist. I hope you will mostly recover after 4 to 6 weeks by rest and proper PT. Just let us know.

      Take care and be positive

    • Anonymous
      July 21, 2006 at 10:15 pm

      hi sil & welcome,

      actually neurontin is safer than lyrica. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 21, 2006 at 11:11 pm


      Welcome to the forums and to our family 🙂

      I just recently switched from Neurontin to Lyrica after 30 months on Neurontin, wish I had done it sooner. So in my case Lyrica has done wonders. I am glad that you are improving, keep coming back here. Take good care of yourself.


    • Anonymous
      July 25, 2006 at 10:43 pm

      lidocaine was mentioned in a thread about going to the dentist. I beleive that thread said not to do the lidocaine, but the novacaine was ok. Better check further to make sure it is ok!

    • Anonymous
      July 25, 2006 at 10:50 pm

      [B]Posted by Suzanne
      Member Join Date: May 2006
      Location: Northern Virginia
      Posts: 71 [/B]



      I commend you for coming to this forum to research the issue for your patient. I wish every heath care practictioner was so diligent.

      I also wish I could be more specific, but I recall an article by a dental surgeon regarding research about Lidocaine and Gillian Barre Syndrome. I believe the conclusion was that with some patients that Lidocaine can cause GBS by breaching the blood/brain barrier.

      Perhaps some of our more senior members will recall the article from the old forum. Gene, do you recall the reference about this one?

      [B]Hope this might help some![/B]

    • Anonymous
      July 26, 2006 at 9:00 am


      i can’t remember the particular thread, but, as you said, i believe lidocaine is a no no. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      July 26, 2006 at 7:18 pm

      Not many people here seem to take pain killers – most are on other drugs, but for me, Dilaudid does the trick.

      I only take a small amount now – 2 mg when the pain gets to the point it keeps me awake or makes it impossible to function (this happens about twice a week).

      I was taking 2 mg every 2 hrs for about 3 weeks, when I was really sick and the pain in my back was unbearable. Yes, the doctors told me about the risk of addiction, but at that point, it was the only thing that relieved the pain, so I didn’t really care. Fortunately, I did not get addicted, and my docs continue to give it to me to use “as needed”. This is such a life saver for me.

      Otherwise, I’m on Effexor and Clinoril. Between those and the occasional Dilaudid, the pain is under control, and continues to diminish.

      I wish the same for you.

    • Anonymous
      July 26, 2006 at 7:29 pm

      gene It took me a while to go back thru all the threads but it was titled with Dentist in the title and I have been dealing with the Dentist recently.

      I never can remember what antibodic are good for the people with GBS and DIDP either. Maybe we should have a thread for just those kinds of important information.

      I consider myself very luck not to be feeling much pain….only the numbness and tingling and once in a while a sore muscle. I am able to take Motrin for that and it works for the sore muscles. Takes the edge off the tingling for a few hours.

      Hope everyone is enjoying their Summer! 😎

    • Anonymous
      July 26, 2006 at 7:30 pm

      The article about Lidocaine is in “Anesthesiology- The Journal of American Society of Anesthesiologists Inc” in July 2002.

      I think the link is [url]http://www.anesthesiology.org/pt/re…VUHncsf61urcJSa!276062241!-949856144!9001!-1[/url]

      I got this off of an old post from canuckgirl1 in the “old” forum, in case it’s possible to access this info.

      The information is over my head, but might be worthwhile bringing a copy to your anesthesiologist to interpret.

    • Anonymous
      July 26, 2006 at 7:33 pm

      Thanks so much for posting that source! I think it is a good idea to have a folder of these kinds of articles. I have found that they do not have time to read everything and if they don’t think they have any patients with GBS they don’t use that information often and it gets forgotten!

    • Anonymous
      July 26, 2006 at 7:34 pm

      Well, I just tried the link that I posted re the Lidocaine and it is apparently outdated.

      Maybe there is another way to access the Journal articles.

    • Anonymous
      July 26, 2006 at 7:38 pm


      Yes, I agree about having a file for these things. I try to print out the ones that I find helpful, but haven’t gotten around to organizing them yet, so I have things, but have trouble finding the ones I want.

      I found something else that references a link on the old GBSFoundation forum website. don’t know if this one is still vaid either. [url]http://gbs-cidp.org/forums/showthr…light=Lidocaine[/url].

    • Anonymous
      July 26, 2006 at 10:12 pm


      Welcome to this site and I am glad you found it quickly. I take Lyrica for the pain and find it to be great. I went 2 years just putting up with the pain but then realised that I wasn’t functioning as well as I could. Now taking Lyrica I am back to work “Part Time” and the pain level is good. I still get a burning feeling in my feet but this is when I get to the point where I have done way too much. You need to rest as much as possible. It is important in keeping this illness under control.

      Good Luck and best wishes