Progressive Neuropathy/Atypical CIDP – Neuro wants 3 month IVIG

    • Tim 2016
      June 23, 2016 at 1:45 pm

      Hi all. Recently diagnosed with Atypical CIDP/Multifocal neuropathy. I have had issues with my hands and fingers for the last year and a half. My hands go bright red/blue and i lose all sensation in my fingers. I have radiating pain from the fingers through the wrist and up to both elbows. Shooting pain is also a common event. I recenlty had a nerve and muscle biopsy done which were unremarkable. I also had an ulnar nerve transposition to try and alleviate any strain on the nerve. It didnt work. Things seem to still be progressing. over the past few months, it has gotten to the point where it is extremely difficult/painful to use a pen to write /type on a keyboard. My nuero wants me to have a three month trial of IVIG. Has anyone had symptoms similar to what i mention? If so, how fast did your symptoms progress. Thanks for any feedback.

    • jk
      June 24, 2016 at 9:45 am

      Tim, welcome and good luck. 2 things get my attention first, your question is directed at a very small sub-group. Be that as it is, the Second thing is this from elsewhere on the GBS website: “Multifocal Motor Neuropathy (MMN) is a rare condition that causes weakness without significant loss of sensation.”

      Emphasis on without loss of sensation.

      the article is here: http://www.gbs-cidp.org/variants/mmn-overview/multifocal-motor-neuropathy-mmn-progress-challenges/

      A partial answer to your question is… “E. Treatment with cyclophosphamide or human immune globulin (HIG) can produce useful functional improvement in patients with MMN. Improvement in strength after treatment with HIG (for example 1 g/kg/day x 2 days) is common (50% to 70% of cases), but the length of benefit is variable, lasting from 2 weeks to 6 or more months. The dose and frequency of subsequent treatments is based on individual patient response.”

      here: http://neuromuscular.wustl.edu/antibody/motpn2.htm

      How fast a patient recovers with treatment for multi focal motor neuropathy (mmn) lessens in importance in relation to how long the treatment is effective.