I am still screaming

    • Anonymous
      July 16, 2009 at 11:46 pm

      Hi remember I was going to scream if I didnt get answers So my MRI came up normal I am assuming my EMG was normal as well otherwise why would he make me do an MRI afterward. I am going to look into B12 deficiency but if that doesnt work should I ask for a nerve biopsy? what is the likelyhood that a negative emg can still be CIDP. PLease refer to my previous post for my history if you have an answers let me know.

    • Anonymous
      July 17, 2009 at 8:56 am

      i too just had an MRI. no results yet. i am not sure what thr=ey are looking for. I guess CIDP shows up in the brain. My symptoms are getting worse. The incontinence anyway.

    • Anonymous
      July 17, 2009 at 2:05 pm

      Tara – I would get a nerve biopsy. Then you will know for sure if you have CIDP or not.

      Jo-Jo – When a dr does an MRI & suspects CIDP they are looking for inflammation. The dr may be looking for inflammation on one of your cranial nerves. The dr will order the MRI with contrast. Inflammation only shows up with the dye from the contrast.


    • Anonymous
      July 17, 2009 at 9:38 pm

      I will ask. boy a nerve biopsy sounds uglier than a spinal tap and a root canal at the same time. how does it work?

    • Anonymous
      July 18, 2009 at 2:05 am

      JoJo a skin biopsy might tell you a reason for your bowel/bladder issues by way of dxing a small fiber neuropathy. It looks for the amount of nerves present in a small section of skin from 2 places on your leg.
      A sural nerve biopsy will show onion bulb nerve growths. The layers are from regenerated and degenerated and regenerated nerves. Each layer representing a relapse and remission of the neuropathy. Remember there is no true test for cidp, but every test will knock out other possible diseases on the way to the final dx. Don’t give up hope for a dx and never give up or give in.
      If a skin biopsy comes back with a dx of small fiber neuropathy, the next step would to find out what caused that neuropathy-it is a long road, many of us are walking down it with you. Take care.

    • Anonymous
      July 18, 2009 at 5:24 am

      Sorry you are having a difficult time with a diagnosis. I just thought I mention my experience. I’ve had sensory CIDP for several years now and remember during my first attack, I had an EMG and the results came back normal (I can remember that I couldn’t even feel the needles in my legs). Then a few years later (when my symptoms had improved quite a bit) I had a Nerve Conduction test which then came back abnormal (absent sensory reponses, absent F waves, etc). I don’t know why that is??
      Good luck.

    • Anonymous
      July 18, 2009 at 11:51 am

      I think I read somewhere that there is a lag time for things to show is that true?

    • Anonymous
      July 18, 2009 at 3:59 pm

      I found the protein reading in a spinal tap was conclusive with me.

    • Anonymous
      July 18, 2009 at 7:01 pm

      I have already had 4 lps. one for the original GBS, one MS panel and the other two were for seeing if I had gbs again. the panel and the two were negative