Your Replies

  • September 19, 2014 at 7:37 pm

    I had GBS at seventeen. My hospital pillow was often covered in wayward hair. I had a fair receding hairline and some thinning at 18. I thought the early loss was from the GBS but, I’ve since decided that isn’t the case.

    I think the hair on the pillow was from the poor diet and poor health while in the grips of GBS. After recovery I did not see much of an improvement. Since it runs in the family, I expected to lose my hair, just not so soon.

    Now, let’s jump ahead about 34 years. My 19 year old son, who has never had GBS or anything else serious, has thinner hair than I did at 19…by quite a bit.

    Your best bet is probably to get with your doctor and make sure that you don’t have any vitamin, mineral or hormone deficiencies that are causing the hair loss. In the case of my late wife, the stress of cancer/chemo caused premature menopause which caused a number of problems including changes in post-recovery hair density.

    September 19, 2014 at 7:18 pm

    I had GBS as a teen. The twitching gradually subsided for me. However, I still get them on occasion. I recall being awakened at night by leg twitching a few times a year well up into my 30’s, maybe 40’s. I don’t recall that happening lately. I agree with BrittBratt above in that it seems to be tied to overdoing it.

    February 4, 2011 at 1:44 am


    Patience was never my strong suit when I was younger either. Still isn’t I suppose. I had GB at 17. It took me right at a year to get back on my feet without crutches. Every time I read the forums here about moms and dads with kids and jobs and bills who are dealing with GB and its aftermath I am ever so grateful I had GB when I did. I don’t really regret missing that year of high school much. Do your best to take time off, at least a semester or two if you can, and rest up. You will almost certainly get better more quickly that way.

    Also, since a relapse scare a few years ago, a B-complex vitamin referred to as B-100 is my new best friend. Stress reduces your levels of several B vitamins. B vitamins are crucial to nerve health. Even though my levels were at the bottom of the acceptable range, that range didn’t really apply to me and my damaged nerves. Although I was weakened enough that I had to pull myself up stairs using the railing by the time I found out about my low B levels, once I started the vitamins I was back to “normal” for me in 1-2 weeks. Check with your doctor and see what they say about B supplements.

    September 19, 2008 at 11:36 pm


    Over the years I have had great success with over-the-counter lace-up ankle supports. You can find them in your local pharmacy or sporting goods store. There are various brands and varitaions running from around $15 to $30 per foot.

    I used to have ACE brand in a nice white rubber-coated canvas with red lining. I have recently replaced those with stylish black ones from McDavid. I have used them for everything from Bowling to Tae Kwon Do.

    Best of luck,


    June 11, 2008 at 12:45 am

    Jamie, check with your doctor regarding whether you can safely take a vitamin B complex supplement while pregnant. I swear by B-100. It helps with nerve health and we need all the help we can get in that area.

    It got me back to ‘normal’ a few years ago when the weakness and tinglies came back. Turned out I was borderline deficient in one or more B’s and the nerve damage from GB caused the unpleasant side effects to happen much sooner than for someone else.

    I have not had the spasms nearly as often in recent years. I don’t know if it is the B complex but, I’m not going to stop them to see :-).

    April 13, 2008 at 10:32 am

    The webform appears to be broken, or just doesn’t like Firefox. Can someone post info for the Houston/Magnolia chapter? Thanxx.

    April 13, 2008 at 12:20 am

    I think the incapacitation in the “middle of life” has more to do with the depression than GBS specifically. I had GBS at 17. Turned 18 in a nursing home. I didn’t think I had an undue amount of depression at the time. GBS never had me thinking of suicide even when I couldn’t even lift my arms. I found losing my wife of 10 years to cancer three years ago infinitely harder and more depressing. Suicide crept into my thinking a number of times then. Thank goodness for my kids.

    I count myself lucky for having GBS at 17 instead of later. I had fewer responsibilities to complicate things. My heart goes out to all of those here who have had to go through this in the “middle of life”. Not “mid-life”, but the “middle of life”. Wives, kids, jobs, mortgages, bills, argghhhhh! My hat’s off to you all.

    April 12, 2008 at 11:16 pm

    28 years post and I still get the bedtime spasms occasionally. Some are strong enough to bring me back to wide awake from almost-out. Even woke my wife up once with a violent calf spasm. However, I don’t get them nearly as bad as I did 20-25 years ago.

    April 1, 2007 at 12:49 am

    In 2001 I thought I was having a relapse. I was 20+ years post-GBS. My B vitamin blood levels were in the low end of acceptable. Apparently due to my post-GBS status this was not adequate. I have been taking a B bomplex supplement since then. When it comes to nerve health you can’t take chances. Take the B’s.

    November 23, 2006 at 3:31 pm

    When I was in the hospital with GBS in ’79 I talked to another GBS’er who, by his figuring, was on his third round with GBS. He was in his mid-thirties at the time. He figured his first round was as a pre-teen. At that time he was diagnosed with mono. I don’t recall if he had a proper diagnosis on the second round but, they did get it right on round three. He said it felt the same all three times, with the exception of increased severity each time.

    November 23, 2006 at 3:11 pm


    I bought my first pair in a sporting goods store. Since then I have seen them in several other sporting goods stores and several chain drug stores.

    November 21, 2006 at 12:05 pm


    I had a relapse scare a few years ago. Tingling and increasing weakness just like GBS. A neurologist did an EMG and a few other tests and pronounced I was just getting old [at 40?]. Normal aging. I could only get upstairs by pulling myself on the railing, foot drop was back, ankle-turning, arghh! A few weeks before I was carrying my son to bed up those stairs. My doctor told me that my vitamin B levels were at the bottom of the ‘normal’ range and that perhaps I should try a B complex. That did the trick. After a few weeks the tingling was gone and my strength returned. Now, I take B-100 complex daily. It is the only supplement I don’t let myself run out of. Stress kills vitamin B, which can bring on GBS-like symptoms, which causes stress…pop those B’s.

    November 21, 2006 at 11:45 am


    It depends on the severity of your drop-foot. In the beginning I used AFO’s. After some months, the AFO’s were relegated to playing football, bowling and other odd things. Now, the AFO’s are in the closet for ‘just in case’. I have switched to over-the-counter lace-up ankle supports for bowling and such. For everyday stuff, I just take care in selecting my shoes [I HATE shoe shopping]. I look for wide soles, slightly turned-up in front. This protects me from most carpet and slightly uneven ground. The rest of my protection comes from having learned over the years to pay close attention to where I’m walking and, when my attention wanders, how to fall properly 😉 .