What exactly does this mean?

    • June 8, 2008 at 2:05 pm

      Hi all

      I am curious about results of nerve testing. When I was tested, I was told that there was no permanent damage and things looked good for the future. What does that mean and why would I still have tingling and muscle fatigue? I read somewhere here that tingling means healing, other places I have read it means damage. After almost 2 years I guess I am wondering what the future holds even if it is a small amount of hope.

      thanks

    • Anonymous
      June 8, 2008 at 8:27 pm

      Fairly Odd Mother:

      Usually when someone talks of nerve damage, they are referring to the health of the nerve axon. GBS attacks the myelin sheath around the axon. The nerve axon sometimes becomes an accidental snack of the immune system when the immune system attacks the myelin sheath. It sounds like you have very little axonal damage (everybody gets a little axonal damage with GBS) which is a good thing. However, your nerve axons probably haven’t completely remyelinated which is causing the symptoms you describe.

      What does all of this mean for your future? Who knows. You could continue to get better or you could stay the same. Some people have had their best healing after the two year mark.

      Take care of yourself,

      Lee

    • June 10, 2008 at 4:26 am

      Im waiting for my balloon under my feet goes away, I was not given any hope after my last relaps, but my numbness have gone to the middle of the calfs so Im pretty sure I will heal more. but if I have to have the balloon under my feet, then Im just going to enjoy it 😀

    • Anonymous
      June 24, 2008 at 9:02 pm

      Dear FOM,
      [QUOTE]When I was tested, I was told that there was no permanent damage and things looked good for the future. What does that mean and why would I still have tingling and muscle fatigue?[/QUOTE] Lee’s answer is 100% correct. A little more detail about the test’s: An Electromyography, or EMG, involves testing the electrical activity of muscles while assessing the health of the muscle and the nerves controlling the muscle. Often, EMG testing is performed with another test that measures the conducting function of nerves. This is called a nerve conduction study, or NCS. Because both tests are often performed at the same office visit and by the same personnel, the risks and procedures generally apply to both tests.

      Muscular movement involves the action of muscles and nerves and needs an electrical current. This electrical current is much weaker than the one in your household wiring.

      In some medical conditions the electrical activity of the muscles or nerves is not normal. Finding and describing these electrical properties in the muscle or nerve may help your doctor diagnose your condition. EMG may aid with the diagnosis of nerve compression or injury, nerve root injury, and with other problems of the muscles or nerves.

      Finally, an F wave is the second of two voltage changes (potential differences) observed after electrical stimulation is applied to the skin surface above the nerve away from the spinal cord (distal region). F waves are used to measure nerve conduction velocity, and are useful for evaluating conduction problems in the group of nerves near the spinal cord (proximal region of nerves). In a typical F wave study, a strong electrical stimulus is applied to the skin surface above the distal portion of a nerve, away from the spinal cord, so that the impulse travels both distally (towards the muscle fiber) and proximally (back to the motor neurons of the spinal cord) — also known as orthodromic and antidromic, respectively. When the orthodromic stimulus (or forward impulse) reaches the muscle fiber, it elicits (causes) a strong M wave that indicates muscle contraction. When the antidromic stimulus (return impulse) reaches the motor neuron cell bodies, the impulse is reflected and travels back down the nerve towards the muscle. This reflected stimulus evokes the second, weaker F wave when it reaches the muscle.

      Axonal damage or dysfunction generally results in loss of nerve or muscle potential amplitude; whereas, demyelination leads to prolongation of conduction time.

      [COLOR=”Blue”]If the remyelination process occurs properly, then electrical impulses with proper nerve conduction and velocity will be seen with the EMG/NCS and F wave tests.[/COLOR] With the information you were given by your doctor, it sounds like the remyelination process should be nearly complete – and there was very little axonal damage. However, like Lee said, just about everyone will get some axonal damage.

      The tingling should go away within 2 years unless you have more axonal damage than diagnosed. Unfortunately, some fatigue will probably be with you forever as a residual from GBS.

      Warmest regards.

      Jethro

    • Anonymous
      June 25, 2008 at 12:25 am

      Hey Jethro, good to hear from you 🙂 Thanks for the explanation, one that I can understand ~ ha! I’m 13.5 years out and still tingling with muscle fatigue, even more as of late. But hey, I can still walk, albeit, slow/stiff and can do my own personal care 😎

    • Anonymous
      June 25, 2008 at 9:15 am

      Thank you Jethro for a great answer that I could wrap my mind around.

      Fairly Odd Mother,

      When I had my last conduction study (NCS) they told me that the tingling was a good thing…..That I could treat the tingling like the nerves springing back to life.

      I told them that I didn’t like the tingling, and it was uncomfortable. When a sage old neuro from St. Lou looked me in the eye and said, after going through what you went through if it wasn’t tingling you probably wouldn’t feel it ever again…..

      I humbly agreed.

      [COLOR=”Magenta”](Interesting note, on my first conduction study, they checked and re-checked the machine thinking it was broken – even telling me I needed to go to another room and have the test there. NO ELECTRICAL PULSE AT ALL down the axom in my legs. NONE. NOTHING. Almost a year and a half later, I can’t run a 10 second 100 meter dash – but my re-hab Dr. has me run on a treadmill!!!)[/COLOR]

    • Anonymous
      June 25, 2008 at 12:49 pm

      Great info here! Thank you. I had tingling and minimal weakness for 4.5 years post GBS and then it went away for about 15 years only appearing when I was really tired or had over done it. About three years ago, they resurfaced on a full time basis and has gotten really uncomfortable. The pain in my feet, which I did not have initially following GBS, has also hit about 3 years ago. I had testing done and the neuro confirmed GBS residuals. I, too, can still walk and work etc. but I think I must look really funny when I first get up in the mornings or in the evenings after my body is tired. I walk like a duck and man do I hurt….everywhere it seems, but the feet are the worst.

    • Anonymous
      June 25, 2008 at 5:04 pm

      Interestingly new research shows that the nerve conduction study does not correlate with level of residual fatigue and that people suffering from fatigue may have normal studies. Even though nerves heal they might not get back to normal and fatigue results. Jeff

    • June 26, 2008 at 12:57 am

      I expect the fatigue to come and go for awhile if not the rest of my life. Good days are much more often now so that is a good thing. I appreciate the info and the explaination. I assume from other posts that morning muscle stiffness/tightness especially after a hard day before is normal.

      As my current doctor said he would like me to see a neuro but w/o ins I dont know where to go or who to see. He would also like me to see a therapist for the anxiety. Not sure if there are state programs for neuros here in idaho. Or even a sliding scale would work. How would I find out this info? I would like to see someone and make sure that things are still plugging along the way they should be. I will be at my 2 year mark next month. As a matter of fact, I felt my first “something is not right” on the 4th. By the 21st I was in the hospital because it had progressed so far and gotten so bad. Wow. 2 years almost. Seems like an eternity because GBS consumes you so much.

      Thanks again for all the info!

    • Anonymous
      June 26, 2008 at 3:34 am

      FOM and everyone:

      I would recommend everyone reading the following article that was in the Summer 2005 publication of GBSFI [I]The Communicator.[/I]

      [url]http://www.gbs-cidp.org/newsletters/2005summer.htm[/url]

      [B]Fatigue in Guillain-Barre Syndrome[/B]
      [I]Robert G. Miller, M.D. & Jonathan S. Katz, M.D.
      California Pacific Medical Center, San Francisco, CA [/I]

      Regards to all.

      Jethro

    • Anonymous
      July 6, 2008 at 2:56 pm

      [QUOTE]Interestingly new research shows that the nerve conduction study does not correlate with level of residual fatigue and that people suffering from fatigue may have normal studies. Even though nerves heal they might not get back to normal and fatigue results.[/QUOTE] Jeff

      Jeff,

      Do you have any references for the new research you mentioned?

      I’m having trouble convincing my neuro that I am still affected by fatigue (as well as pain) from my bout with GBS 5 yrs ago. Medical references I could show her would be very helpful.

      Best wishes,

      Suzanne

    • Anonymous
      July 6, 2008 at 6:33 pm

      I am 58 and 18 years out and still have the tingling. If all you have is tingling in your feet, I would say count your blessings. I know you do FOM, but the past 7 years have turned to the worse for me, and I am sure it will get worse as you age. I have residuals from head to feet and everywhere in between. Lots of severe pain for me is my biggest problem, but my Dr. is good to give me narcotic drugs to deal with the worst part of it, and I appreciate him for that. If not for controlling the pain I would honestlly commit suicide, because I could not stand the pain.
      Again FOM, count your blessings everyday you have left here, and be prepared for the next life where there will be no GBS. 🙂

      PS – What has happened to Gene ? I have not been on here for a few months and have not seen him here yet. I do hope nothing bad happened to him.

      God bless,
      Drummer

    • July 7, 2008 at 10:21 am

      drummer
      Oh I count em daily and it does scare me that age will bring daily problems. For now I enjoy each moment and hope for the best.

      Gene’s info is here….

      [url]http://www.gbs-cidp.org/forums/showthread.php?t=4133[/url]

      and here

      [url]http://www.gbs-cidp.org/forums/showthread.php?t=4264[/url]