A Little History about my wifes battle with GBS

    • Anonymous
      July 18, 2006 at 10:32 pm

      I didn’t fully tell the other members here about my wifes battle she had with GBS as I have been her care provider for the last 6 yrs. I just wanted to share this. I’ll tell you a little about my situation, everything started out in February 2000 for my wife.

      Well, at first she started getting sick at her stomach, accompanined by vomitting. This went on for quite awhile, she went to a hospital in Shelbyville Ky, she was in there a total of 4 times. Every time the Drs came back with a different diagnosis, they went from urinary tract infections to one thing after another. One of the Drs said it was all caused by stress, well they even did an ultra sound. Which I don’t think they knew how to read the results, anyway.

      The sickness only got worse, finally in May my wifes mother had her taken by ambulance to a hospital in Louisville Ky. 45 minutes after she had been there as to which they ran an ultra sound, they came back with a diagnosis of a diseased gall bladder, It was 3 to 4 time larger than it should have been, she had surgery the next day for the removal of the gall bladder.

      I thought that would be the end of her problems, Not quite. She started having trouble with tingling & other things. A neurologist that was in the US from Russia was called in to examine her, she suspected GBS by what my wife was describing to her. They did a lot of tests & they confirmed that the Dr was correct, the next morning her respiratory system was shut down, & she died the Drs someway or another brought her back. She went through plasma pherisis 5 times they also did IVIG. She was completely paralyzed at first, she stayed in the hospital for 3 mnths, & was taken to a nearby rehabilitation center.

      After 1 mnth they got her where she could walk using a walker, she had to learn how to do everything all over again. The GBS hit her extremely hard, she also had a form of CIDP that the Drs claimed was so advanced they couldn’t even classify it. But anyway she has had one hospital stay after another since 2000.

      In 2004 she had to have 2 large stones removed from her bladder, & a mnth later she got a colitis infection that was so bad it destroyed her colin. No meds would stop it, so she had surgery for the removal of her colin. The Dr said it was one of the worst cases he had ever seen he removed 95% her colin. He said at first he didfn’t think she was going to make it to the fact he only gave her a 5% chance of living. But she beat the odds & she fought it & made it, she was in ICU for 3 mnths due to problems. One of them was they couldn’t keep her temp down, so she was placed on a cooling pad with lines that went to a cooling unit. This was the only way they could keep her temp down, but she finally made it back to a normal temp mode.

      She finally got out of the hospital again, I forgot to say she has an illiostomy & has to wear an ostomy pouch on her lower right abdomen, as to which she is unable to change it because she has limited use of her hands still. So I take care of changing the ostomy pouch, she also has a GTube in her stomach as to which this is the way she takes her meds. They are all crushed & dissolved in water & put in through the tube, thats another thing I take care of. She is currently on generic Neurontin 800 mg 3 xday, for nerve pain as well as Hydrocodone 7.5 500 mg for pain.

      Another thing the GBS did was it almost completely destroyed her nervous system, she had constant nightmares & they got to the point I thought she might eventually wind up in an institution. Her psychiatrist put her on Seroquel 300 mg 2 xday, within a mnth the bad dreams went away & she got where she wasn’t afraid to go to sleep. One thing that kept occurring she kept seeing hands trying to grab hold of her & pull her through the bed, but that went away finally. So now we’re just getting on with things she still has the bad nerve pain & the tingling still prevalent but the generic neurontin seems to help keep it under control. I hope what I’ve shared with you gives you a little insight as to why I came here.

      As I said I am her careprovider, just wanted to share this. 😉

    • Anonymous
      July 18, 2006 at 10:55 pm


      What a herendous time your wife has had. She is very blessed to have you as her care giver. Thank you for sharing your story.

    • Anonymous
      July 19, 2006 at 11:04 am

      Your wife has gone through a tremendous ordeal, what a strong person she must be. I can relate in a very very small way to some things. I was misdiagnosed, had ultra sounds done and was told that I had GI problems, but nowhere near to the extreme of your wife’s. It was more then a year later that treatments were finally done for CIDP. During the first three years, I would have nightmares. I remember one, I was being attacked by a bird of prey and I could literally feel the talons in my flesh.

      Your wife has my prayers that life will start to be better for her. You’ve shown that when you love someone, you’d do ANYTHING possible for them.

    • Anonymous
      July 19, 2006 at 10:12 pm


      I thought I had it bad with my fiance being in and out of the hospital for the past six years with different ailments, but you’ve definately got me beat! I’m glad the nightmares have stopped. Hope everything returns to normal for you soon, but on the other hand, normal is boring anyway.

      Hang in there and please give your wife my regards.


    • Anonymous
      July 20, 2006 at 11:04 am

      dustdemon, thanks for sharing your wife’s story. you both are very strong people, and i hope you both can find a new normal really soon. you should be very proud of yourself for standing at your wifes’ side all thru those long and hard years. i’m sure she really appreciates all that you do for her. i applaude both of you for getting to this point together, you both are sooo strong. keep up the positive attitudes!:)

    • Anonymous
      July 21, 2006 at 9:26 am

      Wow. There is no proper response. Just wow. You have both been through so much – too much. Isn’t it amazing though, that as bad as it’s been, you hang in there and can even find beauty, peace, hope, and especially love during this whole thing? Thank you, dustdemon, for your caregiving. For not giving up, for loving your wife in sickness and in health. Thank you for your integrity, honesty, loyalty and the steadfastness that you have so willingly given her. Our world needs people like you. I wish for you, today, a beautiful day with your wife – one that is filled with contentment, hope, and determination.

    • Anonymous
      July 21, 2006 at 11:47 am

      God bless you for your committment to her. I was a Hospice volunteer for years and I saw some wonderful examples of “In sickness and in health”. You are to be commended for you faithfulness to your sweet wife and I know she appreciates you and loves you more that she could ever express. How long have you two been married? Piano Woman

    • Anonymous
      July 21, 2006 at 2:53 pm

      [FONT=”Comic Sans MS”]Thank you for all the well wishes & support, I just take everything one day at a time. As for how longe we have been married on Nov. 19th we will have been married for 29 yrs. We have 2 daughters Mary Ann is 27, Stephanie is 25, & Eric our son is 24. We have 2 grandaughters & a grandson My daughter Stef is pregnant & she has a little girl due in Oct. So my wife has something else to give her more enticement to keep on going, she went to the rehab Dr yesterday & he increased her neurontin because the nerve pain has been making her even more miserable. So we’ll have to see how this turns out. [/FONT]