52 yr old male newly dx with GBS

    • Anonymous
      December 16, 2011 at 10:44 pm

      I was dx Oct 10, 2011 with GBS. I received a flu vaccination 18 days earlier. It started with bilateral foot numbness and unsteady gait. Within 3 hrs I was unable to walk. In the ER, MRI and CT were done. A neurologist saw me while I was in the ER. My wife (we both are nurses) informed him of the flu shot. L P was done enroute to floor. Initial dx of GBS was made after the lp. Awaken the next am with r. Arm involvement. IVIG was started 36 hrs after first symptoms. I received 5 doses. After one week I was transferred to acute rehab doing 4 sessions per day for almost one month. Initially I was denied acute rehab and my wife had to file 2 appeals before acute rehab was approved. Got to love insurance companies. After spending 35 days in hospitals I was set free. So after 8 weeks of purgatory I am ready to move on with life. A summary of my residual issues are: weakness of lower legs with improving numbness and strength. Using a walker and AFO braces. R. Arm and r leg weakness greater than left side. Proprioceptor issues. And the normal numbness, pins and needles ect. I appearred to have plateaued with my recovery . Love this forum as I plan to be a regular visitor. AND yes, my neurologist says the GBS was caused by the vaccine and documented as such as well as the consulting MD’s.

    • Anonymous
      December 17, 2011 at 5:29 pm

      I was about the same age and got it in 10\07 After 11 weeks I was walking in stores with the wife and went back to work after 6 months I also was in the hospital for 5 weeks; You sound like you are close to the same time frame of healing- good luck to you in your recoery I left the hospital in a wheel chair after about 11 weeks I was walking’

    • Anonymous
      December 18, 2011 at 9:00 am

      Welcome Mark. I took the flu shot this year because I thought it was safe-guess I will rethink that next year. I was in the hospital 38 days about 6 years ago and while my recovery is not as complete as I once hoped I did have significant improvements. Hang in there, take it slow, don’t push and enjoy each one of your successes. Jeff

    • Anonymous
      December 18, 2011 at 9:07 am

      Thanks guys. Scared as s..t. I want to get back to work and to my life. My wife has to do it all at this point. I will light a candle in church today for all the GBS survivors and their families.

    • Anonymous
      December 18, 2011 at 11:22 am

      One day at a time; healing is slow, but it’s happening; don’t overdo, but keep trying to do things, so your body can re-network it’s functions.
      God bless you and yours, as you make your way along!

    • Anonymous
      December 20, 2011 at 8:45 am

      Started outpatient PT yesterday. Went pretty well. Lots of numbness but that’s all. Sure wish I could type using both hands

    • Anonymous
      December 20, 2011 at 3:43 pm

      Good luck to you! I got mild GBS after the H1N1 flu shot 2 years ago. I am doing a lot better, but not 100%. It morphed into chronic viral issues, causing ongoing joint pain and fatigue. It is not ideal, but it is tolerable.

      I have worked the whole time though. Worked at home for one month after the onset of symptoms and then went back to the office, an hour commute by train. I have 2 kids under 5, so they were 18 months and 3 1/2 when it happened to me and I kept up with it. I was never hospitalized, always mobile, but had lost reflexes, arm weakness, lost 25 lbs, numbness/tingling etc.

      I wanted to give you some hope, that you will get better. I rested a LOT that first year, basically on the weekends and evening when I could. Make sure you rest when you are tired, do not push yourself or you will relapse with fatigue. I learned that the hard way. Hang onto hope….GBS will teach you a lot about patience, and what really matters in life. I am type A and I had to learn to accept that I can’t do it all and to be happy with what I can do.

      Hang in there and stay strong!

      Jessica

    • December 20, 2011 at 4:22 pm

      [QUOTE=jessicah]Good luck to you! I got mild GBS after the H1N1 flu shot 2 years ago. I am doing a lot better, but not 100%. It morphed into chronic viral issues, causing ongoing joint pain and fatigue. It is not ideal, but it is tolerable.

      I have worked the whole time though. Worked at home for one month after the onset of symptoms and then went back to the office, an hour commute by train. I have 2 kids under 5, so they were 18 months and 3 1/2 when it happened to me and I kept up with it. I was never hospitalized, always mobile, but had lost reflexes, arm weakness, lost 25 lbs, numbness/tingling etc.

      I wanted to give you some hope, that you will get better. I rested a LOT that first year, basically on the weekends and evening when I could. Make sure you rest when you are tired, do not push yourself or you will relapse with fatigue. I learned that the hard way. Hang onto hope….GBS will teach you a lot about patience, and what really matters in life. I am type A and I had to learn to accept that I can’t do it all and to be happy with what I can do.

      Hang in there and stay strong!

      Jessica[/QUOTE]
      Your story sounds like mine, except my “mild” GBS started while I had the flu, not after a flu shot. I say “mild” because, although I was not incapacitated like so many here, I was absolutely terrified of what was happening to me. The skin on my entire body felt like I had electric current running through it all the time. I couldn’t sleep, eat, work or function well as a father & husband.

      After my diagnosis, having an answer calmed me a bit. Still, it has never gone completely away, it simply varies in intensity. As long as I get plenty of rest, it’s tolerable (and sometimes I don’t even notice it for hours!). I’ve learned to accept the annoyance, and go on living my life. And life is good! 🙂

    • Anonymous
      December 21, 2011 at 11:03 am

      Brad,

      Glad to hear there are others like me, but not really, there should be none of us! 😉 I am glad that you are hanging on too and trying to look at the positive.

      That sensation you described sounds EXACTLY like what I felt. I had shooting pains, numbness, tingling, weird sensations, burning sensations. When I shaved, I could feel it for a while afterwards, like my skin was crawling. I was terrified too, so scared that I was going to be hospitalized, paralyzed, etc. I was stumbling around. I was so anxious that my sister told me to ask the doctor for Xanax, the anti-anxiety med and the doc prescribed it for me!! At one point, I was pacing in one place, freaking out. It was a horrible experience and I would not wish it on anyone. In retrospect, I think the anxiety was part of the reaction because it did a number on my hormones.

      Once this happens to you, you don’t take anything for granted anymore. I was looking over my shoulder for a long time fearful, but now I am looking forward. Glad to hear from you and that you are doing well.

      Jessica

    • Anonymous
      December 21, 2011 at 11:50 am

      [QUOTE=jessicah]Brad,

      Glad to hear there are others like me, but not really, there should be none of us! 😉 I am glad that you are hanging on too and trying to look at the positive.

      That sensation you described sounds EXACTLY like what I felt. I had shooting pains, numbness, tingling, weird sensations, burning sensations. When I shaved, I could feel it for a while afterwards, like my skin was crawling. I was terrified too, so scared that I was going to be hospitalized, paralyzed, etc. I was stumbling around. I was so anxious that my sister told me to ask the doctor for Xanax, the anti-anxiety med and the doc prescribed it for me!! At one point, I was pacing in one place, freaking out. It was a horrible experience and I would not wish it on anyone. In retrospect, I think the anxiety was part of the reaction because it did a number on my hormones.

      Once this happens to you, you don’t take anything for granted anymore. I was looking over my shoulder for a long time fearful, but now I am looking forward. Glad to hear from you and that you are doing well.

      Jessica[/QUOTE]

      Jessica,
      The way you decribe your sensations is exactly the way I feel. They are worse at night. I only take Xanax at bedtime and it seems to help. Maybe I should take it during the daytime but I already nap 2-4 hrs most days.

      Thanks for everyone’s reply. I would reply more often but it makes my hands extremely numb for hours.

    • Anonymous
      December 21, 2011 at 12:31 pm

      Although everyone is different, you will read from many others’ experiences that recovery is a long process. I hit several plateaus and seemed to regress at times, but in my case those turned out to be temporary and over the long haul I had steady improvement. So guard against over doing it as others have noted (and be careful when on your feet at these early stages) but don’t feel that your recovery has plateaued at this early stage. And while you are celebrating GBS survivors and families, I would like to give a special thanks to the physio-therapists who helped me and who I will never forget!

    • Anonymous
      December 21, 2011 at 12:35 pm

      Mark, I was diagnosed on 12/28/10 and went through pretty much the same course of treatment as you. I returned to work after 3 months and continue to improve. I can’t say that I am 100% but I can live with the residuals that I have today. Hope you also have a speedy recovery.

    • Anonymous
      December 21, 2011 at 3:21 pm

      Dear Mark,

      I just realized I made a faux pas by saying you were celebrating GBS survivors and their families when you mentioned lighting a candle. I think that the holiday season got the best of me and while we do wish to celebrate our families and supporters, I didn’t intend to demean the anguish and suffering many GBS survivors are going through.

      Happy Holidays to All.

      Frank

    • Anonymous
      December 22, 2011 at 6:57 am

      [QUOTE=FrankinNairobi]Dear Mark,

      I just realized I made a faux pas by saying you were celebrating GBS survivors and their families when you mentioned lighting a candle. I think that the holiday season got the best of me and while we do wish to celebrate our families and supporters, I didn’t intend to demean the anguish and suffering many GBS survivors are going through.

      Happy Holidays to All.

      Frank[/QUOTE]

      No offense taken..
      Mark

    • Anonymous
      December 22, 2011 at 1:17 pm

      I had worse problems at night too, strange how that is. Xanax can be addictive, so I would take the minimum that you need. I took one at night too. I was on it for a year and the doctor gently coaxed me to a different one, Klonopin, because he said xanax can be addictive and you can start relying on it to go to sleep. I never took the klonopin and just quit the xanax cold turkey. I think it caused dry eyes and mouth and little bit of increased anxiety because when I stopped it, I felt a little better. But when you are in the beginning and in the throes of this, it helps loads!! You need to get good sleep to recover. Hang in there and you will beat this!!