dx nov/07 and treated with IVIG

    • Anonymous
      January 14, 2008 at 11:15 am

      Hi My name is Dave W and I am new to this. I was dx in Nov/07 and was put on 2 treatments of IVIG in Nov and one month later 2 more. What kind of results would you see if it was working. I noticed that I have reflexes in my knees that have been gone for almost a year. Is this a good sign?

      This forum has been very helpful to me. I was glad I found it.

    • Anonymous
      January 14, 2008 at 11:20 am

      If you have CIDP then you will need to be on a regular treatment schedule with immuno-modulators, such as IVIG, prednisone, solumedrol, or plasma pharesis.

      With IVIG, most people get a 5 day loading dose & then go on to get treatments as needed. Some people need infusions once a week while others only get them once a month. You just have to figure out what works for you.

      Getting your reflexes back is WONDERFUL! It’s a sign that IVIG works for you.


    • Anonymous
      January 20, 2008 at 8:39 am


      Thanks for replying. Yes I was dx with CIDP in nov 07. I have had numerous
      emg tests, every blood test out there and a spinal tap. The emg showed nerve damage, the blood test showed nothing, the spinal test showed elevated protein levelsalso my reflexes were not present. I have numbness in the toes,bottom of the feet up the front inside of the legs to the knees and now it is starting in the fingers. I still have feeling on the back of the legs and some on the top of my feet and toes. Very little motor control in my toes. I find that I feel weaker and number in the evenings than in the morning and day time. Can walk up stairs with something on my feet but it is difficult without. Will not even try to run up or even run, afraid that I will run out of steam. My feet can be very painful at times as if I were walking on eggshells.

      Had 2 rounds of ivig treatment hoping for more. They really seemed to help.

      Does this sound right for a dx for cidp or could there be something that they are missing.


    • Anonymous
      January 20, 2008 at 2:32 pm

      It certainly does sound like CIDP. You really need to push your neurologist to use the regular protocol for treatment which is 3-5 consecutive days of IVIG at 2g per kg and then find a maintenance schedule that works for you. Having 2 treatments & then nothing isn’t going to help you, really.

      Good luck.

    • Anonymous
      January 20, 2008 at 5:14 pm

      Sure sounds as if you were lucky getting a diagnosis and the IVIG so soon. It took me over a year from my onset to get the tests and IG, so I surely hope that the earlier IG will help you.
      From my own experiences…my first of what they call the ‘loading dose’ that which consists of the four-five day intitail doses? I felt absolutely wonderful after the infusions, when compared to the ‘before’. That doesn’t mean YOU will find it so…right away…patience on the part of you and your doc is the key here? Some docs aren’t as patient as they could/should be.
      Sometimes, IG results can be very subtle? Such as suddenly ‘feeling’ a pebble in your shoe…and it creeps up on you in surprise when it happens… For me, lately it’s been the ‘almost’ ability to FEEL my keys in my hand without looking at them.. This is a small thing to most folks…but a really big success to us here… Just keep an ‘awareness’ diary about those things you think might or might not be happening…You might just be surprised…as I have been.
      Keep hope!