A little depressed

    • Anonymous
      December 20, 2006 at 9:44 pm

      Saw my neuro today. Still no reflexes, was told it would take 3 yrs from onset(5/05) to fully recover. Because of having myasthenia gravis, she insists I take imuran to avoid a crisis,which I had in 1998, said it was not for my GBS.Wants me to see another neuro to do another work-up to rule out any other autoimmune diseases for which I might be at risk.


    • Anonymous
      December 21, 2006 at 12:11 am

      Cheer up Peggy. I haven’t had reflexes since 1991 and could pass for 100% healthy in 99% of settings until a few years ago when I got CIDP. Myelin regrows at a millimeter a day or something like that so depending on your rehab and everything you might regain some stuff you lost way before 3 years. I don’t know how bad you were hit though or how MG might effect that.

      MG and GBS is rough but I’m betting you’re a tough bird 😉 I don’t really know what to say other than you’re in my prayers and have faith. Find something to take your mind off things if possible.
      Everything feels like it sounds like such a cliche’d when I say it.

      Imagine what it would feel like to lay in the grass here in this picture with the temperature 80 degrees and the sun on your face.

    • Anonymous
      December 21, 2006 at 12:23 am


      I’m really sorry you are feeling so low! Please know I am thinking about you, maybe that will help is some silly way.

    • Anonymous
      December 21, 2006 at 1:16 am

      Peggy, Hang in there & don’t give up. I will keep you in my prayers.

    • Anonymous
      December 23, 2006 at 7:05 pm

      Hi Peggy,

      I too have no ankle reflexes but seem to walk pretty well. I’m two years post GBS today. Try not to be depressed. Look at what you can do and how far you’ve come. Merry Christmas.


    • Anonymous
      December 23, 2006 at 7:12 pm


      I was diagnosed with CIDP in 1984 and have no reflexes in ankles, and only minimal at knees and by elbows. Sometimes a little more and sometimes less.


    • Anonymous
      December 23, 2006 at 11:30 pm

      I want to thank all of you in this GBS and CIDP family. Your replies were very helpful. Happy Holidays. Jerimy, I may call you sometime.


    • Anonymous
      December 24, 2006 at 1:22 am

      Call anytime Peggy I don’t mind at all. Take care and have a Merry Christmas.


    • Anonymous
      December 25, 2006 at 6:57 am

      keep your chin up and don’t feel like you are on your own. We are here to give you support. It seems like a long time 3 years but it is amazing how quick it will pass.

      Best Wishes

    • Anonymous
      December 25, 2006 at 9:53 am


      Done worry about what the doctor said about how long it will take to recover. When Patty was first diagnosed as deaf, the doctors said she would never be able to talk. They were wrong. It’s a good thing we didn’t believe them. Remember they are practicing medicine; they haven’t got the hang of it yet. 😮

      Have a Merry Christmas and a Happy New Year. You will be in my prayers.

      Jim C

    • Anonymous
      December 25, 2006 at 6:36 pm

      [QUOTE]Remember they are practicing medicine; they haven’t got the hang of it yet[/QUOTE]

      That is a fantastic quote Jim.

    • Anonymous
      December 25, 2006 at 8:33 pm

      We’ll be praying that things turn around for you.

      You’ve some prayer warriors out here…. We’ll get to work!

    • Anonymous
      December 27, 2006 at 5:16 pm

      I love it…:D
      20+ yrs on post GBS and my reflexes are still not good mainly on my left hand side and I am no longer ticklish ?????
      Hang in there and remember it could of been alot worse.
      Hugs and support

    • Anonymous
      December 28, 2006 at 11:11 am

      Although I’m still not a year past my onset I still don’t have reflexes in ankles, knees, wrists or elbows. I am clumsier than I used to be – it adds some comic relief usually. Kiwi mentioned not being ticklish. Me neither. I didn’t realize this until the other day. I was tickling my daughter and she was trying to get me back and we realized that I was no longer ticklish. Strange but then I guess not so strange when you think about he function of the nerves.
      I wish all of you well.
      GBS/MFS March 2006

    • Anonymous
      December 28, 2006 at 1:36 pm

      I have no reflexes (10 years post), but am still extremely ticklish on the bottom of my feet. I found this out when I recently had my first pedicure. Also, they were using some type of exfoliating scrub and I could not tolerate it at all. My feet are just too sensitive. Also, a friend was joking with me and came up behind me and started tickling me around my waste. I think it actually hurt as I reactivly slugged him in the stomach with my elbow – oops, everyone knows now to not touch me.

      So, I would just like to share that I have gone on these past 10 years with no reflexes, balance is goofy most of the time and I have done just fine. We adapt to our situations as time goes by. And of course, this support group is the best in the world!!!