going numb again

    • Anonymous
      March 21, 2009 at 12:41 pm

      Well it has happened again. Doctor says i am in the 5% but GBS might be back. Had a spinal tap yesterday waitning on results. Went numb again after the flu. Now their talking CIDP. thought i would get results yesterday. they are talking about putting me back in the hospital. I guess i will know something monday.THis is the second flare up after the flu.I went to a new dr. he seemed knowledgeable. Didnt waste any time getting the tests done. my other dr saw me last week but wanted to wait a week. she was moving practices and wanted to wait until she was at her new practice. needless to say we changed dr. this one was recommended by another GBS patient who sees him. No driving until we get this resolved fine with me i am having trouble walking let alone to att empt driving. Having to type with a finger instead of all of them. Getting a bit frustrated. Each time there is a flare up results in permanent damage last time it was my feet this time i am afraid it will be my hands. They didnt do anything with last flare up though. They also want to fuse my ankle so it will be more stable and wont turn in. guess that means a trip to the hospital and back to rehab. Talked to my theraqpist and she said she would be glad to help me again.
      Keep me in you thoughts and prayers thanks

    • Anonymous
      March 21, 2009 at 2:26 pm


      My family and I wil keep you in our prayers

    • Anonymous
      March 22, 2009 at 6:32 am

      I am so sorry to hear jo jo i’m praying for you hay here’s a little funny might help we can start the one finger typing contest i only use one to most time but i can’t sell ether lol. get well son we are praying for you god bless jim.:D

    • Anonymous
      March 22, 2009 at 7:37 am

      Hi Jojo

      you’re in my thoughts

      best wishes

    • Anonymous
      March 22, 2009 at 9:39 pm

      You are in my thoughts and prayers.
      God Bless,

    • March 26, 2009 at 3:37 am

      Im one of those that have got it twice, dont worry in my case I was quicker to recover from the secound time. I hope it will be same for you. I pray for you 🙂 and your family

    • Anonymous
      April 8, 2009 at 11:31 pm

      I had my first attack of GBS, or possible CIDP in the Spring of 2007 mainly in my legs. In March of 2008 my hands began to go numb and stop working, and two weeks later, my left leg went limp and I went back in for Ivig. The Neurologist told me it might be CIDP, and that if I had another occurance, he would probably treat it as such.
      Both episodes were preceeded by a chest cold or flu. Last summer my family doctor told me to be careful to avoid flu shots, and he gave me a prescription for Tamiflu which is actually a cure for the flu. There have been several times since then that I’ve been exposed to the flu, took the Tamiflu as a precaution, and it’s worked.
      I still have numb fingers, numb feet, and weak ankles, but my Neuro said he thinks it was one of the rare GBS reoccurances. Yours could be a reoccurance too. Don’t lose hope my friend.

    • Anonymous
      April 9, 2009 at 8:11 pm

      dr is now saying CIDP but hasnt gone thru with IVIG. Need an ankle fusion as well. was looking under CIDP forum and everone seems to agree that i need IVIG, only person not in aggreance is my dr. He has not said anything further. I may call him tomorrow and see what is up. Numbness is very irritating. my therapist says my quads are still weak. i am getting frustrated. i want to not be numb or at least not be so weak all the time.

    • Anonymous
      April 9, 2009 at 8:43 pm

      Hang in there Amy, and keep pushing til you get what you need. Keep us posted and know you’re in our thoughts.

    • Anonymous
      April 9, 2009 at 8:58 pm

      JoJo sorry to hear you are having residuals/flare up/ cidp? I’ve kinda went down the same path as you.. Mine started as gbs, and now considered cidp… I don’t know what course of treatment is best for you.. I hope your doctor has offered you some options and ideas… The good news is you are on top of your situation, and action will be coming… I responded well to ivig and the methylpred steroids and now am done with the ivig… Be aware of risks as well as the rewards for any of the treatment plans.. Good Luck and keep us posted… deano

    • Anonymous
      April 10, 2009 at 10:40 pm

      Second opinions can be a wonderful thing.

    • Anonymous
      April 17, 2009 at 7:01 pm

      still havent proceeded with any treatment. My mom has been in Floriida i guess will discuss it when she gets back.

    • Anonymous
      April 23, 2009 at 10:36 am

      I too seem to be going numb again, slowly, but its there.

      I was diagnosed with GBS two years ago. My symptoms began with numbness in my toes, then feet, calves, etc. also in my hands, then I started getting weaker and less balanced. About 2-3 weeks later I was in the hospital, at my worst I was unable to walk and mostly immobile. Scarily, my doctor actually had GBS as well, and he walked with a cane and could not open his hands fully. I was finally given IvIG, and I guess that seemed to help. My bounce back took time but progressed to the point where I was almost as normal.
      Long story short, since then, I have had “residuals” or a recurrance of symptoms, at the EXACT same time each year, in April. This may well be nothing more than coincidental. Last year at this time my residual symtoms were minor, and eventually went away.
      As I write this I fear that I am regressing fruther and faster than last year, and fear also that I will continue to regress. Not to happy about that prospect. My feet and hands are “buzzing”, feeling a little numb, and I feel a little weaker walking up stairs.
      Professionally, this time of year is one of added mental & some physical stress (I teach and also coach a spring sports team whose schedule becomes quite long and competitive right around now); I wonder if stress plays a large role in reactivation of symptoms…? Allergens? My sense, or thought is that it is possible that my self-imposed stress is a factor, but the strange thing is that stress couldn’t have caused the disease, so why is it aggravating it’s residuals?
      Maybe I am a mild CIDP case, my sense is that there is no black & white with GBS/CIDP.
      ANy thoughts on stress-related symptom reactivation would be great, or if anyone by chance also has an annual recurrance of symptoms, or any general advice, Id appreciate it.
      I am new to the forum and appreciate all the information it offers.

    • Anonymous
      April 26, 2009 at 5:22 pm

      still experienxing numbness but back to my regular life duties(work, driving etc.) No more talk of an ankle fusion now i am back in physical therapy to build up my tendon to do a tendon transfer from the back to the front on my left foot.I wish they would just fix it my foot has a callus on the bottom and it hurts after walking,.Now they are saying i can take my AFO off of my right foot and walk without it in therapy. i guess we will try it on friday, my first day in therapy.

    • Anonymous
      April 26, 2009 at 6:56 pm

      Hi Jo Jo! I have the heels of my feet that get callused. Boy do they hurt after bring on them a few hours. I kept trying to figured why they were getting that way and saw myself standing and realized that my toes are so dead feeling in my feet that I use my heels more for balance. Now trying to figure out the right kind of shoe to wear to put more pressure on my toes and give those heels a break. Hope you get to feeling better soon! Aggrivating having this stuff and not getting better! Good luck this week! Hugs
      Linda H