I am under care from the same doctor as you.
I / we are thinking about stopping the IVIG as a diagnostic step to see what happens. I’ve improved some but have reached a plateau over the last year and a half. Still weakness in legs but short of running and skiing, I’m pretty functional. I’d prefer not to do IVIG forever of course.
Are you still taking the maintenance dose after a full recovery?
I’m sorry to hear you are having so many problems. According to my doctor, my understanding is that there are very well accepted protocols for the administration of IVIG. Many doctors, however, are unaware of these protocols or for reasons I don’t understand fail to follow them.
In general, the “loading dose” of IVIG is 2 gm/kg of body weight evenly divided over 5 days. I started my loading dose at Hopkins on a Monday, and completed it on a Friday. Thereafter, I received “booster” or “follow-up” doses at three week intervals, at a rate of 1 gm/kg of body weight. These are all widely accepted standards for IVIG.
I saw no improvement at all until after the second or third follow-up dose. I started the loading doses on October 1, and it was not until the end of November that I demonstrated improvement. Thereafter, the improvement was rapid, and I recovered 100% of my motor nerves by March. It does take time to show improvement, but if all you have had is one part of the loading dose, then it is obvious to me that you probably would not see any improvement.
I do strongly suggest an appointment with one of the Centers of Excellence (Hopkins would be a great choice). They can confirm your diagnosis and write up a treatment plan. Having a Hopkins treatment plan in hand might make it much easier for you to get your IVIG in sufficient dosage to make a difference.