GBS and Tingling

    • May 18, 2008 at 11:05 pm

      Hi All,

      For those of you who are recovering from/have recovered from GBS, how long did it take for you to have the tingling/numbness sensations go away? I was DXed with GBS on 1/9/08 and received my first IVIG treatments that night.

      My strength is returning, and I think some sensation. I still feel numb in hands, feet and abdominal area. It is really hard to tell on a day-to-day basis that I am improving. Week-to-week, however, I do notice small differences.

      This list remains a constant source of support for me! Thanks to all of you who contribute – it helps a TON to know that there are other folks going through similar issues.



    • Anonymous
      May 18, 2008 at 11:17 pm

      Welcome Tom!
      The recovery process is different for everyone. Having said that, my onset was August 2006 and I still experience some tingling, twitching and muscle spasms in my legs and feet. I think most of us here still have some of those residuals. It may help you to keep some sort of journal so you can log any progress you make. Then when you are discouraged you can look back and see just how far you have come in your recovery. Best wishes to you!

    • Anonymous
      May 19, 2008 at 4:12 am

      Welcome Tom :

      It could be years…………..I contracted this horrible syndrome September of 2004. I think it was couple of years after the recovery stage that I finally noticed that the tingling was gone. Be patient, it will pass with time. 🙂


    • Anonymous
      May 19, 2008 at 9:03 am

      Hello Tom
      I was dx’d in 1993 and the tingeling never went away, but subsided so much that after about 5 years I could ignore it most of the time. I was dx’d with GBS a second time in 2004 and the tingeling is very strong 100 percent of the time. I have learned to “tune it out”, sort of. Anyway – you are getting a wide range of replies. The answer to you question is nobody knows for sure

    • Anonymous
      May 19, 2008 at 9:04 am

      [FONT=Georgia][SIZE=3]Tom the tingling & numbness never did go away for my wife, it was prevalent the entire 7 yrs after she came down with the GBS in 2000 until I lost her last yr. I have neuropathy & I have either tingling or stinging pain in my fingers & toes. All of my fingers & toes have the numbness in them, that is really irritated by rain it just seems to get worse in rainy weather I’m on Lyrica & the only thing so far I noticed is the burning in my feet has subsided.[/SIZE][/FONT]

    • Anonymous
      May 19, 2008 at 9:36 am

      Hello Tom. My Gbs onset was oct 13 07 and the numbness in my chest and sides went away about january of 08. I am back to work now. My numbness is only under my toes and the ball of my feet.I usually have bad cramps in my feet at the end of the day, take norco couple of hours before bed. Its been 7 months now. I am 53 soon be 54 years young. I am sure age plays apart of your progress. I was numb from the shouldes down. My freind had it when he was 40 and he made a complete recovery in 4 months. My nuro told me 6 to 12 months. My feet are better now then 2 months ago.I had 5 days of ivig infused in 3 days. That was my treatment from U of M hospital.Also was hospitalized for 5 weeks
      Take care

    • Anonymous
      May 19, 2008 at 5:25 pm

      I had GBS 25 years ago and the tingling has never really gone away. I still have it as well as cramping and “electric shocks”. As I age the tingling seems to be getting worse but it is still bearable. For the most part, it has become part of who I am and I don’t pay a lot of attention to it. It is worse when I am tired. Each of us is different, so it is really just a wait and see game.

    • Anonymous
      May 20, 2008 at 4:29 pm

      Its been 18 mounths for me and the tingling has not gone away. In fact I think I have reached a point that it is never going to go away but I don’t know. Mine get worse if I over do it but it is hard not to. I can live with the tingling and I thank God for the progress I have made.

    • Anonymous
      May 20, 2008 at 6:31 pm

      I recall a post a while back from someone ,who said, “Gene said after the 24 month stage, all the sudden healing came about for him”. I dont think anyone really knows when to give up.

    • Anonymous
      May 21, 2008 at 9:52 pm

      GBS 5/5/05 Neurologist thought it was my myasthenia gravis crisis and put me on IVIG, prednisone and imuran. 4 months later not better she suspected
      gbs. Have tingling in legs and arms and still can’t walk.


    • Anonymous
      May 25, 2008 at 7:14 am

      I had GBS in early 2007, and I still have significant tingling in my hands and feet. If I do more walking during the day or get very fatigued, it gets worse. Luckily, at this point the tingling is more annoying than painful. I don’t know when or if it will ever fully go away, but if this is something I have to live with for the rest of my life, I will gladly do it in exchange for having my life back!

    • May 27, 2008 at 9:22 pm

      Thanks All,

      Some days I pretend not to notice, other days I can’t help but notice. One day at a time – that is what I am learning! I did run 10 miles yesterday – I think I can put a check in the improvement column 🙂



    • May 27, 2008 at 11:01 pm

      10 miles, YOU ARE DOING AWESOME!!! Congrats!!! I don’t have gbs or cidp, my son has cidp, and I doubt I could walk 10 miles! Unless of course there was a Coach purse store at the end of the walk with that special large white bag I want!!!! Probably not even then!! I am so happy for you, keep up the awe inspiring news and milestones!
      Dawn Kevies mom

    • Anonymous
      May 28, 2008 at 11:23 am

      When I was laying in the hospital bed 7 months ago unable to move from ribcage down, I never thought I would walk again.
      I am so thankful that now I can walk with a walker and progressing to the cane. I can do this and have the numbness and tingling sensations with it. It doesn’t hurt but it can get on your nerves at times.
      I have noticed over these last few months the sensations are less severe and I notice a tiny more feeling in my feet and legs. I will take what I get and hopefully as time goes on yours will be less and less and eventually go away.

    • Anonymous
      June 4, 2008 at 11:37 am


      I was Dx’d in January 2007 – stayed in the hospital till mid April. I’m still recovering and have occasional pain associated with my constant tingling in my feet.

      I will state that I’m able to split wood again and was on my neighbor’s roof helping him tear off his old shingles after a tornado ripped through our town a couple of weeks ago.

      Hang in there. I truly believe it can become managable. I struggle with being “hooked” on prescription medication – I HATE THAT AND WANT TO STOP AND TRY EVERY WEEK UNSUCCESSFULLY, but I function pretty good when I take them.

      Be safe everyone.

    • Anonymous
      June 4, 2008 at 4:25 pm

      GBS/MFS 2/06 Still tingling in feet and hands when tired and walking too much but I will rest for a while and that seems to help.