New and without a clue!

    • Anonymous
      April 22, 2007 at 12:25 am

      Hi everybody my name is Jen and I am a 26 year old who in the prime of life (last year) was diagnosed with gbs. It all started so simple I woke up one morning in March and had a charlie horse in my right leg. Next morning the left and right leg had the same charlie horse. Day after day the pain got worse and nothing helped. I tryed to ignore it but I was getting weaker. So one day about two weeks after the onset I went to take a bath and couldn’t get out of the tub. As my children watched me struggle and finally had to get their dad to lift me out of the tub I realized it was time to do something, if not for me at least for my children. And so the adventure began! Three er visits,test for everthing from blood clots to lime disease and a million guesses as to what I had but still no answers. Doctors vists and blood tests didn’t show anything. People had me believing I was imagining things. What I wasn’t imagining was the pain or the fact that I couldn’t stand or walk hardly at all by this point. Finally I took on last shot at a differnt ER and the doc admitted me and told me I wasn’t leaving till I had answers. My first day in I had a random doctor who was a jewish rabbi he ask me to tell him what was going on, mid way through he said you have gbs. After two more days of testing including 3 MRI’s, 2 CAT scans,3 spinal taps and some kind of midevil shock thearpy (EMG) the verdict was in it was GBS. Thank God an answer or so I thought. I was so glad it wasn’t something deadly or something I was imagining that I wanted to explode with relief. But I didn’t know what I was talking about. IVIG was the cure at least that was what the doc made me believe. The more questions I ask the answers I got were less and less. My mother who has be in the nursing feild for 30 years couldn’t even find answers. I grew incresing angery with myself, the docs and everyone else I came in contact with. Finally after 10 days in the hospital I was home with my family and able to get around alot better. I thought the nightmare was finally over but that wasn’t the case. The pain returned within days and so did alot of other things. I couldn’t understand how I wasn’t better like the doc said I would be. Then he tells me it is something that takes time to heal. But he couldn’t tell me how long or what was really going to happen. A year later and still know so little about what is happening to my body and mind. Everyone around me tries to be supportive and understanding but I am looking to talk to others with same problems so I get a better understanding of this disease. They think it is very possible that I now am moving into CIDP which is even less I know about. I am hoping to reach out to others for useful tips and help. I am so glad to have found a website where I have the chance to interact with others in the same situation.:D

    • Anonymous
      April 22, 2007 at 1:12 am

      Welcome to “Our Family”. I look forward to getting to know you better as you get to know all of us. There is lots to learn ~ and it never stops! Please keep asking questions. And when you need to vent, you’re more than welcome to get support from us.

      Do you take anything for pain relief? Most of us use neurontin or lyrica. They work very differently and more effectively than narcotics. Go to the user bar at the top of this page and click on “search”. Then type in neurontin or any other query you may have. Sometimes you may find it most benefical to just ready many posts all at once. Or you may want a quick answer to a question. Whatever works for you, we are here.

      Again, welcome 🙂

    • April 22, 2007 at 9:23 am

      Hi mommy Jen,
      My ten year old son was dx 10/06. We too were dx with aidp (gbs) and later with the variant cidp. (3/14) We have recvd. two courses of ivig and are scheduled for a third this Friday. I am still in confusion as well, read my thread from earlier this morning. If you want to e-mail me I can give you my phone # and we could talk. I am limited in my info compared to the very educated members on this forum but maybe I can help in some way! Any questions that you have, post, someone will surely answer you! I get so much help from this site, even it is just reading others problems and posts!
      Have a nice day! Dawn, Kevie’s mom 😮

    • Anonymous
      April 22, 2007 at 9:40 pm

      hi jen & welcome,

      not really important, but you don’t go from gbs to cidp. if you have cidp, you have it right from the start, but it can’t be Dxed w/o time, so it is first Dxed as gbs. if you are over doing it, it is your residuals acting up or you are having more real gbs attacks. if it is the former you need lots & lots of rest lying down. if the later you need ivig or pp. you can try mucho rest & see if you get better or go to a gbs neuro for a ncv. when it is compared w a former ncv you took, you will know if you are really getting worse or just feel that way. take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      April 22, 2007 at 9:45 pm

      Gene I was told I have CIDP mostly from a flu shot but when recently the Canadian Blood Services called me to donate blood I told her about my CIDP from a flu shot she told me you don’t get CIDP from a flu shot. She told me I got GBS then it turned into CIDP. That came from a Nurse. So not to sure anymore. I believe your version is more correct.


    • Anonymous
      April 22, 2007 at 9:52 pm


      this has been discussed before & all back then agreed on what i said. could all of us have been wrong when it was discussed? i know never to say never, but till strong info says otherwise, i’ll stick to what i posted. 🙂 take care. be well.

      gene gbs 8-99
      in numbers there is strength

    • Anonymous
      April 23, 2007 at 10:28 am

      Hey Jen, glad to see you made it and were able to post. Everyone here is wonderful and willing to help however we can. Take care and feel free to message me anytime if I can help.


    • Anonymous
      April 23, 2007 at 3:05 pm

      GBS doesnt change from GBS to CIDP, however, a person with GBS has a chance of later on getting CIDP. I believe it is something like a 20% chance of a GBSer getting CIDP at a later date.

    • Anonymous
      May 1, 2007 at 9:42 pm


      The time it takes to recover depends on how much damage was done to the nerves. The greatest recovery will take place in the first year (according to my son’s nuerologist) but can continue to recover for quite some time.
      Be careful not to overdo, but you also dont want to give up the part of life you enjoy. Starting some strength training might be very beneficial. Did you have any physical rehab? That might be something to talk to your physician even now a year later.