Really new to this!! Need support

    • Anonymous
      March 3, 2012 at 12:07 pm

      In the begginning of February my back started bothering me at work. I thought maybe I was working harder than usual or that age was catching up with me. That was like 2-5-12. By the 9th I ended up leaving early because it hurt so bad. I had the weekend off so I thought resting would make it better. Hands tingling and feet tingling and both arms and legs felt like they were asleep and heavey. So I called off on the 10th and again on the 14th. Went to the er on the 14th and they called a neuro in. He said he thought I had gbs and wanted to admit me…but I dont have insurance and didnt want that. Sohe sent me home with steroids and the promice to call back the next day. Next day numbness and tingling was spreading and I ended up back at the hospital and started treatment. I would have never left in the first place if the doctor would have explained to me what gbs was. I had never heard of it. I was lucky thast it didnt affect my breathing. Ive been home now for a little over a week and have been getting stronger. I can slowly walk the stairs now and get myself into and outof the tub.
      But I dont know anything to expect. My doctor has given me no information about this. I dont know how long to expect recovery to take. How long Im gonna be in pain (the dr doesnt want to give out pain meds). Is the pain normal? Did the spinal tap mess up something? Or the blood patch that came later??
      I am so lost…all I want to do is cry.

    • Anonymous
      March 3, 2012 at 1:17 pm

      You need to find a neuro who knows something about GBS. The pain is normal but can be managed with certain pain meds. Gabapentin and Lyrica are two common meds that are prescribed for this type of pain. Sometimes narcotic based meds are also prescribed. Some folks get thru this fairly quickly (I hope that will be you), others not so much. That’s me.


    • Anonymous
      March 3, 2012 at 3:22 pm

      Hi Nikki,
      With the vast majority of GBS cases, you will get better. i heard that from my doctor and i thought, right away. It does take time. My case sounds simular to yours. The pain will get better, sleep will come more easy, and numbness and tighling will also improve. we are talking here in months at a minimum and years. I will be happy to talk with you on the phone. Just email me at and I will send my number.

    • March 3, 2012 at 3:22 pm

      Nikki, you mention age catching up with you, if you don’t mind, how old are you? You mentioned no insurance, are you on medicare? If so the hospital should take you. If you can, try to go to a teaching hospital, they usually have more money to absorb cost for the uninsured, or a non for profit hospital. Could you qualify for medicaid? If you are not sure, ask the social worker at the hospital you were at. She could help you with the paper work if you do in fact qualify.
      The pain meds used are as Wayne mentioned, Lyrica, neurotnin (gabapentin) some do use narcotics for the pain as well. If insurance is an issue they will prescribe the neurotnin, Lyrica is VERY expensive. Both of the meds work for nerve pain. You mention the spinal possibly messing up things maybe causing the pain, why do you feel that the spinal is the cause of pain? There is pain after a spinal, typically migraine and at the site but not usually more than 3 days, I would say a week max. The back pain is most probably from the gbs itself.

      Regarding your doc not being helpful, explaining things, he really should have explained the possiblity of the weaknes recuirring. From your description of symptoms, it seems that they came on quickly which is indicative of gbs, but if your symptoms reappear, it could be cidp. I am just telling you this so that you are vigilant on tracking your symptoms, new ones compared to old ones. If you should feel increased numbness weakness again it is time to go to the doc again and bring up cidp. It appears that the ivig worked for you right away, has the weakness and pain subsided and are you only left with the back pain?

      I know while experiencing your pain this may be hard to believe, but if all of the other symptoms besides the back pain have disappeared, you are blessed. Many with gbs end up paralyzed and recover for long periods of time in the nursing home or hospital. Things will get better, a long time ago a man named Gene came up with a meaning for the acronym gbs…getting better slowly. With your description of your residual sympoms I think you will be lucky.

      If you do get the neurotnin, it takes a while to get used to it, regarding operating machinery or driving, so keep that in mind. Good luck to you. If you call up this foundation, you can ask them to send you literature. It is a package that contains several useful pamphlets that come in handy for reference when going to your doc.

    • Anonymous
      March 3, 2012 at 8:55 pm

      Im turning 42 next week. No insurance but I am working on getting medicaid now. I worry about the sinal tap because I developed a horrible headache afterwards that ended up needing a blood patch to fix. Now my lower back gives me pains when it wasnt before. But then it seems like something new hurts everyday so I just dont know. I want to find a better doctor but I dont even know how to start a search like that.

      Thank you for responding. It does help to see that I am not alone.

    • Anonymous
      March 3, 2012 at 9:16 pm

      Hi Nikki,
      Thanks for telling us your story………I know that this is probably a scary time for you, many on this forum have faced like circumstances and have a wealth of information to share. Although similarities/comparisons can be drawn from others’ histories, your recovery will be unique to you. As Dawn mentioned, you are fortunate to not have been impacted more severely. It is important to ask questions and become informed as much as possible. Your pain needs to be controlled…..when that happens you will be in a much better place to deal with your current situation. Don’t overdue, get plenty of rest…… will take time as the body does not heal itself quickly from the GBS virus. I know how tough this illness can be, don’t allow negativity to govern your life, take satisfaction from being able to grow in the smallest of things each day. Wishing you good things in the days ahead… sure to keep us posted on how you are doing!

    • Anonymous
      March 4, 2012 at 12:25 pm

      Hi Tom
      Sorry to hear you have been affected
      I wrote a journal about my experience, it’s quite frank but you may find something in there useful

    • March 5, 2012 at 12:20 am

      Hey Nikki. I think that being able to walk and get in/out the tub after a week is promising. Eat well, rest up. Never stop believing in the ability to recover and stay as positive as you can.