NCV test – at last!

    • Anonymous
      October 19, 2006 at 6:57 pm

      I am very fortunate in that I have not been hit like a sledge hammer with whatever this is and still have periods throughout the day when my arms and legs respond almost normally. (I get hit hardest at night and can hardly walk.) The Dr. has finally scheduled an ncv test. This sounds weird and almost morose, but a part of me hopes that he’ll find something. In fact, I’m concerned the test will be performed when my body is responding almost normally. Is that sick?

      I’m still undiagnosed, still experiencing numbness, tingling, weakness, difficulty breathing at night.

      I still have a knee-jerk reflex in both my legs. Can someone have CIDP or GBS with their knee-jerk reflexes in tact?

      Thanks for listening.

    • Anonymous
      October 19, 2006 at 7:05 pm

      It’s very normal to want to have a name to put on what your experiencing. Waiting for a diagnosis is always hard. I have heard here of others whose reflexes were mostly or completely intact and still had GBS/CIDP etc. The NCV should allow them to give you a definitive diagnosis. Have you been checked for elevated proteins in your csf already????


    • Anonymous
      October 19, 2006 at 7:11 pm

      The NCV is the start. I am with Kaiser Permenente, and I believe my Neurologist is baffled by my symptoms. When my MRI came back clean, he suggested the possibility of my having migraines without pain. I will press him for a spinal fluid test after the ncv.

    • Anonymous
      October 19, 2006 at 7:18 pm

      Good luck with everything, I hope you get some answers soon.


    • Anonymous
      October 19, 2006 at 11:18 pm


      Yes, you can still have your reflexes and have GBS. This syndrome has many different presentations, not all of which are covered in the medical literature.

      You really should have an EMG test, done by someone who does this test frequently.

      Best wishes,


    • Anonymous
      October 20, 2006 at 12:17 pm

      I never lost my reflexes – in fact they become more brisk when I have flare ups. As for the testing and wanting to know a dx I understand and just got my offical dx last month after 3 months, 3 hospital stays, 2 rounds of plasmapheresis. It can be hard to find a dr that is willing to take the time. One EMG was positive for CIDP, the other when I was asymptomatic was negative. My CSF was 45 after plasmapheresis (why they didn’t do it until after the treatments is beyond me!).

      Good luck and hang in there!

    • Anonymous
      October 21, 2006 at 3:40 am

      Essentially CIDP and GBS are peripheral neuropathies known in the trade as lower motor neurone lesions (LMNL) the features of which are flaccid paralysis and absent reflexes and negative Babinski sign (when the sole is scratched the toes point down).
      Upper motor neurone lesions (UMNL) involve spinal cord and/or brain with features of spastic paralysis, increased reflexes and positive Babinski (toes point up on scratching sole.

      “We have seen patients misdiagnosed as ALS. They really had CIDP with upper motor neuron involvement. If demyelination involves the cervical spinal region and there is peripheral nerve involvement in the legs . Physician examination will show increased reflex’s along with atrophy and fasciculation’s in muscles. Thus leading to a misdiagnose of ALS. Have seen cases when after getting IVIg these patients walked out of their wheel chairs. Dr King Engle at USC has helped these patients with IVIg .”