Newly Diagnosed

    • Anonymous
      March 3, 2013 at 12:20 am

      Hello everyone, this is my first time posting.  I was recently diagnosed by 2 neurologists with a CIDP/autoimmune neuropathy “variant”.  I don’t have classic test results that are associated with CIDP, but I have many signs that point to it.  I’ve have very slowly progressive symptoms, some are waxing and waning.  I guess I have some questions for some more experienced people.

      This is a quick list of symptoms:

      Neurological: Slight weakness in both shoulder blades, left hand atrophy and weakness, atrophy and weakness in both feet, fatigue in shoulders and legs, plus generalized fatigue, slightly slurred speech at times, double vision, fasciculations all over the place, paresthesias in all four limbs, brain fog.

      Musculoskeletal: Joint pain in both hips, low back, TMJ, myofascial pain all over.

      GI: IBS for months which has calmed down, severe GERD.

      Skin: tons of canker sores at times, random cuts occasionally appear on my hands and face.

      Here are a few of my pertinent tests:

      WBC count is 3.0, low platelets and neutrophils, CD4 count low, CD3 high, food allergy test positive for about 25 foods, spikes in TSH, positive ANA screen, interleukin 6 and 2 elevated.

      I had a SPECT scan of the brain showing severely decreased cortical perfusion in a diffuse non-specific pattern.  MRI normal.  My spinal tap showed elevated protein (61) and macrophages.  EMG’s are normal except for signs of chronic denervation in my left first dorsal interosseous and a few fascics in my foot.  NCV showed some prolonged distal latencies in the ulnar nerve on both sides.

      Does this all seem consistent with CIDP and autoimmune neuropathy in your experience? I am afraid of MND, but I have had symptoms since 2006, the EMGs don’t support it at all, and there seems to be other labs that support something else.  My neuro said its a very slow moving, relapse/remitting form of CIDP.  We are probably going to start ivig soon.  I don’t really know what I should be concerned with, what questions to ask etc.  Any and all input would be appreciated.

      Thanks so much,