Hi Again….I have my NCS results….

    • Anonymous
      July 16, 2008 at 8:33 pm


      I posted about a month ago for the first time when I knew there was abnormal results with my NCS. I finally have the report. Anyone have results similar to this?

      Electromyogram Results:

      1.Low amplitude right Peroneal motor response from
      extensor digitorum brevis with slowed conduction velocity between popliteal fossa and ankle

      2.Low amplitude right tibial motor response from abductor hallucis with slowed conduction velocity between popliteal fossa and ankle.

      3.Normal right median motor response from APB with slowed conduction velocity between elbow and wrist.

      4.Normal amplitude, right ulnar motor response from the hypothenar eminence with slowed conduction velocity between distal humerus and wrist.

      5.Low normal amplitude in the right peroneal motor response from tibialis anterior with slowed conduction velocity across the fibular head.

      6.Normal amplitude, right sural sensory response with slowed conduction velocity.

      7.Absent right superficial peroneal sensory response.

      8.Low amplitude right median sensory response from the second day (sic) with slowed conduction velocity across the wrist. The right ulnar fifth and radial first digit sensory responses are of normal amplitude and slowed conduction velocity.

      9.Absent right medial and lateral plantar sensory responses.

      10.Elevated right tibial H-reflex latency.


      The above study is abnormal and is consistent with a length dependent sensory motor polyneuropathy. The patient’s foot temperature was low as the time of testing; however, this alone does not explain the findings, which remain consistent with neuropathy.

      Investigation into causes of neuropathy are recommended.

      I have been waiting for a couple of weeks for a referral back to a Neurologist as my GP requested this test. I’m finally out of my latest flare that lasted 2 months. I’m feeling better (still have numb foot and a little difficulty with walking but it’s not that bad right now) and I’m tired of chasing the doctors. Does anyone understand these results? Do you think that I should be pushing harder to get in to see the neurologist?

    • Anonymous
      July 17, 2008 at 11:35 am

      YES! You need to push harder to get in to see the dr.

      You have slowed conduction AND absent responses. This is a concern. The test suggest that you have a polyneuropathy of unknown origin. You need to get to the dr & have them do more tests. Have you had an MRI of the brain & spine & spinal tap? These are important to get for a diagnosis.

      Call the neurologist TODAY & let them know that you are still not feeling well & you have test results that confirm you have polyneuropathy. You need to get in ASAP. The longer you wait the harder it will be to get better.

      Good luck,

    • Anonymous
      July 17, 2008 at 3:01 pm

      You need to do some research on AMSAN. It sounds like you have motor and sensory involvement, which is more than just a slight problem. I have similar results. I’m still trying to get a confirmed dx. Just the fact that you say you are now just coming off a flare up and still have slight problems is the clue to your dr that you do have a problem. Between your flare ups, is there ever a time that you are back to normal, or is it just better to a point and then another flare up occurs? Keep a journal and please call your neuro or gp and get in soon. There are treatments, but the longer you go without them the harder it will be to get good results. Take care.

    • Anonymous
      July 17, 2008 at 5:01 pm

      Thank you for the replies.

      Kelly, (I’m a Kelly too) Yes I had an MRI of the head and cspine in May 2007 w/o contrast. There were 3 very small “white spots” between the white and grey matter. The neurologist thought they looked microangiopathic in nature. I have not had an LP. Until this test all the doctor’s were telling me I was suffering from silent migraines because I do have some head issues going on like vertigo and weird eye movements that they could not catch on the ENG testing. I honestly thought I was dealing with MS until I received these test results.

      I have tried calling the neuro and they don’t return my calls. When I tried to call my GP I found out they are closed for holidays until the 28th of July. So, I guess I just have to wait for now.

      Angel…I will check out AMSAN later tonight thank you. As for your question…my onset was in March 2007. I was sick strait through to July 2007 with severe episodic vertigo and the right side of my face was numb…like novcaine wearing off. Both of these symptoms have settled down to just mild daily attacks which I have learned to live with. No medication the doctors tried for migraines has worked. I even tried an abortive that actally made the sx worse. Around the time the vertigo and numbness settled down…muscle twitch and spasms started in my right leg.

      Since then I have had 3 very distinct relapses or flares. This last one came on only 30 days from the previous one. So basically my sx list is just growing and growing. Once the relapse/flare is over I am left with all the sx plus the new ones but they are just mild. So the answer is NO I have not felt completely normal in 16 months. I feel as if I get just a little bit more disabled after each flare.

      This last flare ended about a week ago or so…and a couple of days ago I noticed I’m having a problem with my right hand. I’m droping things, knocking over things…not really typing well with that hand. Almost like I am losing a little bit of coordination? I could start a new thread and post my sx list if anyone is interested…not sure if that is the sort of thing that you do on this board?

      Anyway thanks again for repling.



    • Anonymous
      July 17, 2008 at 5:24 pm

      Hi Kelly,

      I think you need to see someone as soon as you can. Is there another neuro you can go to? Not in an emergent type manner like this evening, but soon. I know a couple of neuro’s I called way back when wanted to see me in months. Well I figured I’d be dead by then and kept calling until I was seen ASAP. Actually your last post is pretty good to say what has happened to you and like the other’s said, start writing down or typing in a journal EVERYTHING you can. Who you see, when stuff happened, etc. Good luck! Gabrielle

    • Anonymous
      July 17, 2008 at 6:13 pm

      You might also want to check out Miller Fisher Syndrome; ALS, myasthenia gravis; and other variations of CIDP. I have CIDP with cranial and autonomic nerve involvement; some visual and auditory problems but I’ve never had vertigo. One other thing, my doctor at Hopkins did tell me that he has seen CIDP patients who developed white matter lesions – benign – and not MS or migraine related.
      Was your left arm tested? That might give a basis of comparison if it isn’t as damaged as your lower left leg…


      P.S. go ahead and post your symptoms on this thread – just to keep the continuity

    • Anonymous
      July 17, 2008 at 7:13 pm

      Everything is right sided unless stated otherwise…

      vertigo, numb face, cold wet spot on forearm the size of a quarter, brain quakes, cold water splash sensation on toes, great toe numb 24 hrs, charlie horse thigh muscle 24 hours, charle horse calf muscle 2 days, muscle twitches anywhere on leg, muscle twitches hip, horrid muscle spasm from base of skull down back into right arm and ending in thumb…lasted maybe 2-5 mins, vibration sensation both feet, muscle twitches starting in back, vibration sensation now felt up to both knees, muscle twitch in arm, quick warm water sensation down inner left thigh, muscle spasm in back, loss of balance (romberg sign present), muscle twitching begins in left leg, left thumb twitching, neuro visit loss of vibration sensation in great toe + romberg sign present. (diagnosis…silent migraines..huh?).

      3.5 toes and ball of foot goes numb for 2 months. Numb sensation lessons but is still there….vibration sensation back (GP). Banding sensation around toes, muscle twitching is now body wide including my face and neck…it is not constant but here there and everywhere every day. Vibration sensation up to waist. having trouble moving my toes down and up. great toes still pulls up just fine….but not down. banding sensation forearm from elbow to wrist, banding sensation the size of a golf ball on my left forearm. Difficulty walking after 10 mins…right leg swings at hip. Coordination problems starting in right hand.

      OK…today is a good day..I have had 2 quick episodes of vertigo, 1 brain quake, muscle twitching, slight tightening of right calf muscle, face is mildly numb, toes and foot mildly numb and toes still not moving well.

      Wow, I sound like a hypocondriac. If I didn’t have that abnormal test result I’d seriously think I was going off the deepend.

      Julie my left arm was not tested and I only had the NCV done not the EMG.

      Gabrielle…I’m in Canada…I have to get a referral to a Neurologist through my GP. I’m going to have to wait until he is back from holidays.

      Oh and I have been keeping a journal and I use another site to track my symptoms daily.

      Oh and I forgot I have a burning sensation on and off on toes in left and right foot and what feels like electric zaps here there and everywhere every once and awhile.

    • Anonymous
      July 17, 2008 at 9:23 pm

      Hi Kelly,
      I have MS and some of your symptoms do sound more MS related ie. vertigo, some white spots showing on your MRI, vibration and electrical sensations etc. A lumbar puncture would be a good thing to get to rule out MS.

    • Anonymous
      July 24, 2008 at 4:43 pm

      Finally! Will be seeing the Neuro Aug 21/08. They tried to schedule it for November! I said I didn’t think I could wait that long and told the nurse what has been happening for the last month. So she bumped up the appointment.

      Now, in order to get them to call me I had to go through patient relations and tell them what had been going on.

      My GP is back from holidays on Monday. I was thinking about asking him to refer me to yet another Neurologist as I am not happy with the current Neuro and his ofc staff. What do you think….should I try to see if I can get in sooner with another Neuro and start all over?

    • Anonymous
      July 24, 2008 at 5:03 pm

      Kelly, I would suggest seeing your gp asap and telling him about your unhappiness with your current neuro, and ask for another neuro for a second opinion. It sounds like you are being 1/2 tested such as no LP or EMG right?

      And another pair of eyes and opinion never hurts. Take all your symptom notes and any tests, even x-rays that have already been done. Everything that will help him sort through what tests you still need and go from there. And also rule out various other diseases so that he then can treat you for what you do have.

      Good luck. Take good care. Emma

    • Anonymous
      July 24, 2008 at 5:14 pm

      Hi Emma,

      Yes, I agree….I feel that I have not been given proper testing.Thanks for your reply.

      Can I also ask…..has anyone had numbness only last for about an hour and then had it slowly go away to be follow by horrid pain?

      Here’s what happened this morning…and I was not sleeping on my arm. I was on my back.

      I woke up this morning with the little finger and the finger next to it onthe right arm numb. The numbness travelled all the way up to my armpit. It only lasted about an hour and then the feeling started to come back. I wish it hadn’t the pain was wild but that too subsided after a short time.

    • July 24, 2008 at 5:19 pm

      Kelly, my original appointment with the neurologist was weeks away and through calmly working my way through the red tape (and lots of prayer support) I was able to see the neurologist the next day. Fortunately for me I live near Houston, Texas and Baylor College of Medicine which put a world class department within an hours drive.

      I agree with the comments on the urgency of getting in to see a neurologist and that emergency room would probably be useless (from my experience). I was cautioned that I may have GBS when I started experiencing numbness on my face and lips and to go to the emergency room. The staff neurologist (Methodist Hospital Houston) was evidently too busy to make it down to the ER. The attending physician was told through a phone conversation with the staff neurologist to send me home and for me to set up an appointment to see a neurologist. That’s after I had their battery of ER admitting tests, a lot of wasted time and money.

      Keep politely pressing your way through the buracracy and administration and try to talk with the medical staff to help escillate your cause.

      Good luck and best wishes, 😉