Your Replies

  • February 23, 2012 at 4:20 pm

    guppy & northernguitarguy,

    I’m always up for jamming! I played rhythm guitar in a local band for 20 years. Southern rock and beach, mostly.

    Let’s do it! ๐Ÿ˜€

    February 13, 2012 at 8:03 pm

    I hope the forum revives. My work blocks FB.

    December 20, 2011 at 4:25 pm

    [QUOTE=laurel]Best of luck with your cancer treatment Johnny Mac! I hope that you have beat the beast. Merry Christmas to you and yours.
    Seconded, Johnny Mac! It sounds like you have a good attitude, and it’s been my experience that THAT is half the battle. Best wishes from another Mac!

    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!

    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! ๐Ÿ™‚

    November 30, 2011 at 1:29 pm

    Hi, Jerimy! I remember you very well. You were very sympathetic to my symptoms when I first posted here, and I really appreciated it.

    I don’t often post, but I check in quite often.

    Good to see you again! ๐Ÿ™‚

    September 25, 2008 at 4:24 pm

    I still have some numbness in my scalp, varying in intensity from barely noticable to maddening. It sometimes spreads down to my face and neck.

    There was another thread discussing “sensory GBS”. I’m not sure I fall into that catagory, but the title sure seems to match my symptoms. I’m still cold-sensitive (never was before), and my skin still feels like it’s sunburned, or like I have a fever.

    September 10, 2008 at 11:02 am

    Here’s hoping all goes well for you, Linda.

    Prayers from down south!


    August 28, 2008 at 3:03 pm

    I had been dealing with a prostate infection for a few weeks, caught the flu and that’s when it started for me.

    August 28, 2008 at 12:49 pm

    Hey Sara,

    I developed a “mild” case last February, mild in the sense that I was not hospitalized. That, at least, was a blessing!

    It can be quite painful, although I’ve had some relief this week.

    I don’t post very often, but I check in everyday. There is a wealth of information and understanding here. I’m very glad I found these fine folks.

    Good luck and hang in there!

    August 14, 2008 at 4:54 pm

    It’s been a painful week for me, too. I was doing ok for a while, but for a few days now the tingling, shaking, weak legs, [B]sensitive skin [/B]have been working overtime…whew!

    May 22, 2008 at 9:00 am

    I’m looking forward to the link, too. I can’t seem to catch it on


    May 12, 2008 at 10:25 am

    Thanks! I’ll be watching, too.

    May 8, 2008 at 9:37 am

    Hi, Heather. I’m new here, too, but after reading most of the posts in this forum, I can say that you are in great hands! This is the most helpful and understanding group of people I’ve found.

    I hope you MIL make a swift recovery.


    May 1, 2008 at 12:15 pm

    Thanks to everyone for the kind welcome!

    It’s plain that the symptoms are worse if I over-exert, but rest is a difficult thing to nail down. I have my regular job behind a desk, so it’s not bad, but my brother and I run a small sign rental business in the afternoons and weekends. It can be physically demanding sometimes, but it usually takes two to do the work.

    I have two kids in school, I’m an assistant little league coach on my son’s team, etc. I don’t want to risk aggravating this condition, but these things have to be attended to, if I’m still able. My mom and my wife constantly push me to slow down, and I really do when I get a chance.

    Lori, I appreciate your experience with the throat sensation. I was hoping it wan’t something else coming on.

    My wife jokes that I’m getting old before my time. I was in great health 2 years ago. Then I had to donate a kidney to my brother. He has lupus and it caused renal failure. I got through that with a little residual pain, but I got over it.

    Since then, I’ve developed regular prostatitis, fallen arches, Giillian-Barre’ syndrome, AND had to buy reading glasses! ๐Ÿ˜€

    Thanks again to everyone. I’ll be a regular here, now that I’ve found you.