Dr. is testing our 2 year old for MF

    • Anonymous
      September 16, 2006 at 12:26 pm

      Dell was dx. in Dec w/cidp. We think he contracted it about 5-8 months of age. All was going well with every 4 week ivig then in May his neck became very weak. He would be walking if it were not for the neck. He walks with the aid of a walker.

      He can keep it up if he’s in a sitting position but when he looks down (from eye level) it usually falls. Since May, he has been getting 2 treatments a month. If there has been any improvement, it’s only slightly. He’s on steriods (low dose).

      The neurologist told us yesterday he is very perplexed regarding why the neck is not getting better. An MRI last month showed inflamation in the neck roots.

      We did bloodwork yesterday.

      Does this neck problem sound familiar to any of your problems?

      Thanks, Lori

    • Anonymous
      September 16, 2006 at 9:51 pm


      cranial nerve – No. XI Accessory nerve has a branch which joins the Vagus and another which helps supply the trapezius muscle partially affecting neck movement. so it could be MF varient. i don’t know how that fits in w cidp. even more important i don’t know how it may help him recover. wish i could offer more. take care. be well.

      gene gbs 8-99
      in numbers there is strength