Reply To: IVIG/treatment and symptoms
Lori- I know exactly what you mean!!! After the initial loading dose in the hospital, I wasn’t sure if it worked.. I knew I felt better, but chalked it up to placebo effect and the “rest” in the hospital.. it wasn’t until about 16 days or so afterwards that it started wearing off that I realized it must have in fact been working! Then of course there was no question with the 2nd infusion.. it was SOOOOOOO amazing!!! I just can’t get over how quickly I declined with the “relapse” after the cold/virus I had.. I was barely able to walk due to my hip weakness… couldn’t hold my 11 month old but for a few seconds.. it’s just crazy! So I can function a lot better, hold him, work, have better dexterity etc.. but it’s just not like it was after that 2nd one.. So i’ll take not getting worse (I was so scared I’d be in a wheelchair at that rate in a week), as opposed to getting better, though of course i’d prefer to have improvement! I had never heard of IVIG.. much less knew that it was something you had to customize so much! Thank God for modern medicine!!!!
Lori- how did this IVIG go?? Do you feel it might have worked better than in the past (I wasn’t sure if the combination of PE plus IVIG made it work any better?? ) Are you going to do PE again at all, or just try to stick with the IVIG?