Author Topic: My CIDP in remission after treatment  (Read 1096 times)

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Offline Joelene9

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My CIDP in remission after treatment
« on: July 17, 2015, 09:50:20 pm »
  I just had the first treatment this week for my Chronic Inflammatory Demyelinating Polyneuropathy (CIDP) in the feet and lower calf causing moderate to excruciating pain 24-7, numbness and loss of motor. This is a new thread on this topic as the title of those and some of the descriptions have changed. The treatment entailed 3 infusions of IVIg (Intra Venous Immunoglobulin) aka gamma globulin over 3 days done by a home visiting nurse. Each session took 3 hours. The two nurses I had said that I took the infusions well. There will be one treatment per month after this loading dose for the max of 8 months. My neurologist may stop the treatment 4-6 months to see if it goes into relapse. He also said that this treatment is 90% effective.
  The nurses were nice and they asked what gender pronouns and name should they call me. I said that my male side is okay and I am not persnickety over those. I am still presenting as male anyway. They told me that they have done other patients with the IVIg including mostly of those with diabetic neuropathy which requires other things in their treatment.
  The first night after the first treatment, I slept through. The night after the second treatment. I had to get up every 50 minutes to empty the full bladder and I woke up with a slight headache. On the third day, I had the second nurse and she said it is called the 'IVIg hangover'. I noticed a marked decrease of the pain in the feet over the 3 mornings after the treatments. This morning, after the third treatment, I woke up and found that the covers had slipped over the feet and were not generating the severe acid type burning sensation that would cause. I did the usual turnover and stretch and still no pain.
  I then did an exercise on moving my big toes, they moved more freely but with some jerky movement. Okay... Then I tried moving my little toes independent of my big toes. It took about 10 seconds at first then they started to move independent of the big toe. At 30 seconds I had the big toe not moving at all while the small toes moved in unison. The first time in 3 years! Walking today had a longer lope and quicker gait than in the past 3 years. The feet and part of the ankles and the lower calf are still numb but that will take time to reestablish neural pathways to those.

A video made in 2008 with good animation of this disorder: