CIDP and Autoimmune Disorders

    • Anonymous
      June 20, 2011 at 11:40 pm

      Hi All,
      I am new to this forum and am have a question. Within the last 3 months I developed slap foot in my right foot. I went to a neurologist and he did An MRI (back is fine) and nerve and muscle tests (all within normal range). I also have numbness in the area just above my ankle on the outside of my leg, as well as across the top of my foot. I also can’t lift my foot above 90 degrees and can’t stand on my heel. I have a history of autoimmune issues, so I went to a rheumatologist and had blood work. All perfectly normal, except anti SS A is 5 times the high range. This is indicative of sjogrens syndrome, but I have no symptoms. So, the neuro told me to come back in 3 months if my foot hadn’t gotten better. Last week I developed the identical symptoms in my left foot so I went back. He said it may be an autoimmune mediated neuropathy, that my nerves may be degenerating and that the treatment is plasmapherisis or blood washing and to come back in 2 months. This didn’t make sense to me. If my nerves are degenerating, why would I wait 2 months? So I am getting a 2nd opinion tomorrow. I was just interested to hear if anyone out there has ever heard of anything like this and could offer some insights. Thanks in advance!

    • Anonymous
      June 21, 2011 at 1:36 am

      Can’t give you answers but let us know what the second opinion says.

      I had the nerve biopsy to confirm demylation and remylation.

      Lumber puncture showed elevated protein.

      Nerve test showed all sorts of stuff I don’t understand!

      Good luck,

    • Anonymous
      June 21, 2011 at 9:08 am

      It sure sounds like CIDP to me. And the treatment he/she recommends is appropriate, although usually neuros prescribe IVig first, followed by prednisone or some other anti-inflammatory before going the plasmapheresis route, which is fairly invasive. Also, I am not sure why he/she recommended that you return in 2 months. A lot of damage can happen between now and then. It’s smart for you to get a second opinion. If it is CIDP, there is no value in holding off on treatment.

      Good luck.


    • Anonymous
      June 21, 2011 at 10:30 am

      The first symptom of my CIDP was left foot numbness, followed shortly thereafter by right foot numbness. Get that second opinion as soon as possible.

    • Anonymous
      June 21, 2011 at 4:28 pm

      Agree what they said and emphasize two things:

      1. Do not wait. An inexperienced neurologist will let you wait until……

      2. Go to a GBS-CIDP Center of Excellence (a list is located on this web site) or a Neuropathy Center (see or, at the very least, find a Neuromuscular Specialist experienced in performing and reviewing EMG/NCV testing.

      For anybody who wants to read more about types of nerve damage and timelines for both damage and recovery, please see the link provided by MarkEns under my topic Nerve Damage.

    • Anonymous
      June 22, 2011 at 8:53 am

      I went for the 2nd opinion yesterday and the neurologist did a neurological exam and said, “This is not normal!” and sent me for MRI’s, brain, neck and middle back, with and without contrast. So, I spent my evening in an MRI machine. I hate those things! Anyway, he is thinking something more like MS than CIDP since the nerves in my leg seem to be working fine, and my ankle reflexes are normal, however my knee reflex is actually hyperactive. I also have weakness in my arms that I was unaware of. So, he is supposed to call today with the results of the MRI. So, onward….