has anyone experienced

    • Anonymous
      November 19, 2009 at 9:09 pm

      i have had gbs for 3 years now i had a severe case of it and i found out that i have axonal damage to my sensory nerves. and i was woundering if anyone has experienced axonal damage to there sensory nerves and how there doing and how long its been for you and to what extent you have recoved.

    • Anonymous
      December 2, 2009 at 8:30 am

      My father has sensory gbs, it has been 3 long years for us what an evil syndrome, we have gone through so much, we are hoping recovery comes soon . I was told sensory damage takes longer to recover than motor damage. From the research i have done, sensory is not that common. If you dont mind me asking, what pain medication were you prescribed? Do you also get those sharp stabbing sensations? I heard this is the nerve regenerating , i dont know if that is entirely true do you?

    • Anonymous
      December 6, 2009 at 8:55 pm

      it has been 3 years this past nov. for me. i take lyrica because i am allergic to nuerotin. i been on lyrica from i guess when ever. i dont remeber the early times. i also take baclofen for muscle spasm. the gbs when i got it they didn’t know if i would live or die i had a severe case. it effected every thing except my breathing. the parllasis stop just right before it hit the diaphram. thank god. i didn’t have control of my legs or arms at first the motor nerves were also affected i still have work to do with these, i also get twitching at varios spots within my body does your dad get these? i do get the sharp spikes going up the heels and stinging sensations all over my feet. my feet are expecially hypersenstive. what types of meds is your dad on? i was also told awhile ago that i also have peripheral neuropathy on top of gbs. so i can relate that it is a long struggle. my neurologist said those strange sensations is the nerves regenerating also. may i ask where you all are from? i’m in ohio.
      they also say it just takes time. i hate that saying!

has anyone experienced

    • Anonymous
      May 25, 2009 at 3:15 pm

      has anyone experienced loss of cordination and balance ? and when i went to the neurologist for a check up he used the tuning fork and placed it on my ankle bone i could not feel any type of vibration –this had him puzzled So he sent me up north to a different neurologist they did a thourogh neuo physical exam the following week i went up for an emg nerve study he said i have no sensory nerves in my feet and very few in my hands. they want to do more test. he said this is not a typical gbs case. i’ve had this for 2 1/2 years.insight very much needed!

    • Anonymous
      May 25, 2009 at 7:49 pm

      Hello! Mine started out as Sensory Nerve damage before I developed CIDP. But I was diiagnosed with Systemic Lupus back then. You have a Neuropathy of some kind going on with you at the present time. Most likely will get several test done to rule out several Auto Immune Disorders and will probably also be checked for Vitamin B-12 and Diabetes! I have no feeling of a tuning fork at all in my ankles. It’s not GBS going on with you at the present moment but more of an underlying disorder that is most likely auto immune! And there are a number of Auto Immune Diseases out there. I think your doctor did the right thing. You might get lucky and get diagnosed with something right away or you might end up having to have several test done! Good luck!
      Linda H

    • Anonymous
      May 25, 2009 at 11:02 pm


      Were you diagnosed with GBS 2 years ago? I am a little confused. Also, if you have no sensory nerves, you have no feeling at all. You probably have diminished sensory conduction. Yes, GBS can cause neuropathy if the axons of your nerves were affected or if your nerves continue to demyelinate. I hope you find the source of your problem. Many other diseases can cause these problems also, from diabetes to vitamin deficiencies, to inherited neuropathy.

      Take Care

    • Anonymous
      May 25, 2009 at 11:06 pm

      A good test to help determine if you have sensory or small fiber neuropathy is a skin biopsy. I recently had one and my small fiber neuropathy was well defined. Its an easy test and well worth it. I’ve had the tuning fork results also. Along with other problems. If there are any questions that I can try to answer for you just let me know. Take care.

      sensory nerves can be damaged, and will cause severely diminished feeling but as drs say its only skin deep-you can feel slight things with damaged nerves-it just takes alot longer to get the message from the nerve to the brain and back to the nerve again. it slows everything down quite abit, and it takes a while to get use to.

    • Anonymous
      May 26, 2009 at 3:54 am

      I have CIDP and my nerve conduction tests show absent sensory nerve responses (among other things) in my legs – I don’t feel the zap from the test hardly at all!
      I also can’t feel the vibration from the tuning fork on my feet/ankle.
      My balance was badly affected, but after doing a once a week balance class for a couple of months at my local day rehabilitation hospital it has improved quite a bit 🙂
      I hope you can find some answers really soon.
      Good luck,

    • Anonymous
      May 26, 2009 at 12:33 pm

      Before my CIDP started I could balance on one leg for a minute, now it is less than 10 seconds. I especially have problems doing the imaginary tightrope test in the neurologist office. Some days I have “dizzy days” which feels like I am walking on a boat and sometimes feel a dropping sensation like in an elevator. My neuroligist says this is possibly due to the CIDP.

      I have not noticed a decrease in coordination, but have not did any tests or played any strenous games that would test my coordination.

      good luck,


    • Anonymous
      May 29, 2009 at 11:30 am

      Hi Everyone,
      I started having numbness in my feet 9 years ago. It is now in my legs and hands. My coordination is like a toddler trying to walk. I have no reflexes in my legs from the knees down. The right leg is much worse. I have not been able to bend my toes for 6 years. I was first diagnosed with MS. Was treated for that for 3 years before going out of state for a second opinion. CIDP is not commomn so it is often misdiagnosed. I was told by one Doctor that it was all in my head. The best way to deal with CIDP is to take it 1 day at a time. I am now begining to have incontinence problems because of my loss of muscle control is getting gets worse. Have done IVIG for 4 years and it is no longer working. DR told me my next course of treatment will be Chemo. My condition gets worse every year and I walk with a forearm crutch. I will probably be in a wheelchair in 2 to 3 years but I am not going to give in. TOOOO much to live for.