Today is 3 days after my first ever IVIG infusion. I had 55 grams on Thursday over 4 hours and again 55 grams on Friday only they ran it faster so I only had to sit there for 2 1/2 hours. I felt great on Friday when I left so I made the mistake of not taking it easy. I cleaned my car. At about 2 AM I was woken up with a horrible headache. The headache lasted all day on Saturday and part of Sunday. I guess this was the dreaded headache that everyone talks about. Except for the headache I did not have any other side effect from the IVIG. I did not get flu like symptoms or fatigue. So I guess I am pretty lucky. Next time I think I will put my feet up and take it easy. But I don’t know if that was what caused the headache or if I would have gotten it anyway. Are you suppose to take it easy after IVIG or doesn’t it matter if you feel ok? So it is 3 days after the IVIG treatment. How do you know if it is working or doing something? I really don’t feel that different. I still have mild tingling in my feet at night and sometimes muscle aches in my legs off and on. What should I expect if anything? What does the IVIG do exactly? I was told it was suppose to disarm the antibodies that are attacking my myelin…at least for a little while. Is that right? Will my body repair any damage already done or just stop causing more damage?

Well I made it to my appointment to get my IVIG treatment yesterday. Oh my what a diffrence it made. I know it’s not a mental thing because I had no idea , but I could tell a change last night and a HUGE change this morning and today. I went to my physical therapy this morning and he could tell a huge diffrence. I can walk as soon as I stand vs. having to wait 20/30 seconds to even get straight up. I can walk the zigzag pattern and heel to toe . Alot of my pain has gone but I still have tingling in my feet (mostly toes). I am going to try and take things slower this time. My neurologist was pleased and has set me up for the first monday of each month for a year. It took approximatly 4 hours to do the treatment. They gave me 2 tylenol and a benadryl and I took a short nap which made it a little easier. I still am amazed at the change it made. My neuro said for me to not worry even a little about any side effects, because they are rare and I probably would not even have any. If there is anyway I can help anyone please don’t hesitate to ask.
Tim Ray
SEVERE GBS 10/11/2006:)