Reply To: 40 days and no response to ivig – can it still work?

July 24, 2022 at 6:39 pm

Although IVIG has stopped working for me now post covid, when I was first diagnosed, I was in a wheelchair for almost a yr w late dx.  It took 2 yrs for me to get out of the chair and walk.  40 days is nothing. Myelin grows at some ridiculous 1 mm a month or something.  I never ” felt” it working after infusions.  I got it every 2 weeks 50 gms after loading dose 5 consecutive days.  After 6 mos. doc said I could start PT, based on vibration and other sensory and motor tests he did in office. Prior, there was no point as the nerves were so damaged the muscles we dead, I felt nothing. The motor came back with PT, after 2 yrs, every 2 weeks infusions. However, I never got back to normal, and as sensation came back too, it came back in a painful way, due to the nerve damage because my dx was too late.  The key is quick diagnosis prior to real muscle weakness, constant neuropathy. I know a person who got dx the same week he first felt tingling in feet. Immediate Ivig on a regular basis, 2 times a month for 3 yrs, now every 6 weeks and he is normal. 40 days is nothing if you have severe demyelination.