Back again

    • Anonymous
      October 17, 2011 at 4:52 pm

      Well I joined this site in 2003 and was so very lucky to have been “cured” of GBS in 2005. Unfortunately in 2007 I had a relapse and have since been diagnosed with CIDP as my primary disorder and Sjogrens as a secondary oh and a touch of Raynauds as well.
      I remember finding a lot of support and answers to many questions so I have returned.
      I am just completing a years worth of IVIG 3 days monthly to see if that kicks the pants off it again!! I was only going for IVIG every couple months in the start of 2007 and it kept things at bay. It is hard to tell what illness is causing what issues at this point but luckily they can all be treated with IVIG.

      See you in the forum 🙂

    • Anonymous
      October 17, 2011 at 5:01 pm

      Barb were there any triggers to your relapse i.e. illness, over doing physical activity etc ? Sorry that you relapsed and hope the IVIG settles everything down again.

    • Anonymous
      October 17, 2011 at 6:15 pm

      Hello Laurel,
      All that was apparent to me was stress. School, work, living situation etc. I ended up severely run down and sure enough …… This time though instead of neurological pain/numbness it appeared with muscular cramping and severe joint pain (the joints were probably the Sjogrens I am told).
      Anyway it seems as long as I am truly happy and healthy things seem to be okay. Stress can trigger so much!!!!
      On a good note my last EMG in May showed activity in 2 nerves that have not since 2003 so “That is wonderful”!!

    • Anonymous
      October 17, 2011 at 6:38 pm

      I am a big believer that stress is a main culprit for relapse. Glad that the EMG showed some healing!

    • Anonymous
      December 20, 2011 at 10:15 pm

      you are both so right. now if I can apply this knowledge to my own life, it would be very beneficial.
      instead I struggle with stubborness. and keep pushing myself.
      take good care everyone.

Back Again

    • Anonymous
      October 22, 2008 at 8:38 pm

      Hello all!
      I see there are some new posters here — Welcome to all! I have not posted in quite awhile. I decided to take a break this summer. I have had a flare-up again and saw my neuro yesterday. They did some labs and he ordered a nerve conduction study. My reflexes were intact, but I have been feeling like a slug. Legs are heavy again and the muscle cramping and twitching is really annoying. He did mention the possibility of CIDP this time, so we will see where the testing leads. I must admit I am a bit anxious about the whole thing as I don’t seem to have a lot of pain that everyone here seems to have. Mine is mostly pins and needles type and burning in the bottom of my feet when I have been on them quite a bit. The twitching and weakness is the worst for me. Anyone out there with CIDP without the severe pain issues? This has been a very slow course (of something) for me.

    • Anonymous
      October 22, 2008 at 9:28 pm

      I was diagnosed with CIDP in 1998 and I never had pain, mostly the numbness, tingling and prickling, but since it’s severe for me, I consider that numbness to be it’s own kind of pain. I have never needed a pain medication, but if something would relieve the numbness, I’d be on it yesterday.

back again

    • July 8, 2006 at 9:30 pm

      Hi: I’m trying to get use to all the new formats. I had GBS in 1996-97. I think I was one of the first to use the chat room. I keep coming back I guess to part of others who have gone and are still going through the residuals of GBS. The pain in my legs is quite severe, and I have developed complications with my heart due to the GBS at least that is what the docs say. I get discouraged but I know I am still lucky. I’m glad you are all still here. Joan

    • Anonymous
      July 9, 2006 at 12:38 pm

      [FONT=”Comic Sans MS”][SIZE=”3″]Welcome back Joan! We can never have enough people with experience to help us newcomers along.:D [/SIZE][/FONT]