Had neuro appt.

    • Anonymous
      August 27, 2008 at 8:24 am

      Hello everyone,

      I had my neuro appt last thursday and he went over my NCV test results. He did another ofc assessment. I have lost the vibration sensation in my great toe on the right foot again and there was no response at all this time on the sole scratch test. There has also been a change to my gait in 6 months (the last time I saw him).

      He said that he is referring me to a Neuro who specializes in PN. He said that is not his specialty. He did mention that we would be looking at types of PN that mimic MS sx but he does not think I have MS. He did tell me that the results show that my peripheral nerves are demyelinating. And he did mention the possibility of an autoimmune disease.

      He has sceduled a follow up appt with me in 3 months in case I can’t get in to see the new neuro before then cause he does not want me to “fall through the cracks”.

      Soo, back to waiting but at least we are finally heading in the right direction.


    • Anonymous
      August 27, 2008 at 8:38 am

      Hi Kelly! Looks like both are in the same shoes! 😀 We will have to keep each other posted on our outcomes here. Same thing for me. My neuro does not deal with CIDP and is still seeing me but has referred me to another Neurologist at Duke. Duke is going slow on scheduling an appointment. Still waiting to hear from them. Good luck Kelly! Hope they find out what is going on soon!

    • Anonymous
      August 28, 2008 at 1:52 am

      Hi Kelly
      I have CIDP and have noticed that the ‘vibration test’ that I have done on my lower legs, has varied over the years (about 5 years) between Neuro visits. Though, with saying that – the past few months have been about the same (not as bad – touch wood!). My gait varies too. When I am feeling unwell or tired it is usually worse.

    • August 28, 2008 at 1:11 pm


      My demylenation progressed rapidly and a couple of months of incomplete DX and inadequate treatment cost me significantly.

      I didnt get a complete DX or begin correct treatment until I found the right neurologist.

      My current neurologist is a [COLOR=”black”][COLOR=”Red”]neuromuscular [/COLOR][/COLOR]specialist who has treated CIDP.

      Fortunately for me there are multiple university hospitals here with multiple specialists so I didn’t have to hunt long or travel to find the right one.

      A neurologist who specializes in neuromuscular disorders and one who has treated CIDP might be your best bet.

      Push, push, push, don’t allow delays or 3 more months to go by and settle for seeing the same neuro. From what I’ve seen and experienced time is of the essence.

      I prayed for you today.


    • Anonymous
      August 28, 2008 at 1:24 pm

      Thank you all for the replies. I would be interested in hearing more of your story Linda. Good luck to you as well.

      Kazza I find my walking etc. is worse when I am tired. I seem to go through cycles of insomnia which generally kicks off a “flare”. The doc gave me an rx for ativan .5 as needed for sleep. He said it would help the the muscle spasms as well. I’m a little nervous about taking it though. I suffer from moderate fatige and am worried it will worse the fatige. He didn’t rx anything for the fatigue because based on my fatige cycles it seems to go along with the heat. He said that I am suffering from heat intolerance and since summer is almost over I should see my fatigue get better soon.

      Hi Gary…I hear you. My current neuro does specialize in neuromuscular disorders however his primary focus is Parkinsons/movement disorders. I think my GP referred me to him because of the vertigo and unsteady gait at the beginning. Vertigo is finally almost gone thank God!

      Is anyone else familiar with any other PN that mimics MS other then sjourns (I have no idea if I spelled that correctly sorry!)and CIDP? I’m beginning to wonder if the vertigo I started off with was some sort of virus. I guess I will never really know.