Maybe you should have them do the spinal tap to look for elevated protein in your spinal fluid? Maybe you do have CIDP and you just were never diagnosed correctly. I know that the IVIG really helped me. I was progressing downward with numbness and weak legs and hands. After the IVIG i hardly notice i have CIDP. I do have some sore legs if I walk a while and I still have stiff knees at times but really feel pretty good. I can’t imagine where I would have progressed to if I had not gotten the IVIG. Plus I was getting very depressed and lots of anxiety since I had no control over what was happening to me. I think you should seek a new neurologist. I have an appointment in two weeks with a specialist in CIDP at the University of MN. I hope he has only good things for me. Good luck.

Yes, I was very stressed that day and the day before. My 7 year old daughter was home sick from school for three days. My husband was out of town in Chicago for business for that week. I was stressing because I did not know how I would stay home with her without using up all my precious sick time I need for my infusions. So it was stressful that whole week my husband was gone trying to juggle work and a sick child. After my stress load evened out the symptoms seemed to subside. Can stress bring on an attack or symptoms?

How do you find places that do at home or weekend infusions? My infusion clinic only does M-F 8-4 PM so I have to keep taking time off for the infusions and I don’t have much time left for the year and it is only April.

Thanks for the info on calculating your rate Kelly. I am going to question my rate the next time I get an infusion. I don’t know when that will be. I have only had my first infusion set on April 7 and April 8. I have not seen my doctor since before my infusion. Then I only get to see the nurse next week for my follow up appointment. So I will ask the nurse about my next steps. When do I get my next infusion. How do I know I need another infusion? I also have list of side effects to go over with her. I just wish I was seeing the doctor and not her nurse. I am on a waiting list to see a CIDP specialist at the University of Minnesota but I can’t get into see him until June 30. So I am stuck seeing this other neurologist for now. I have to admit that most of my CIDP symptoms have gone away since the infusion. I have some mild burning sensation on the tops of my hands but my hands are not dropping things so much anymore. My feet are not tripping when I walk but sometimes still feel somewhat sludgy and tired. I still have mild tingling in my right foot but nothing like before. I sometimes dream that it was a wrong diagnosis and I really don’t have CIDP. But that isn’t the case I know. But days like this I feel almost normal like i did before CIDP.

I called the infusion center and they said I got 55 grams of Gammulux each day over a 4 hour period. They started the infusion very slow on the first day. she said at 80 and over the period of 4 hours increased it to 300 flow. I handled it without any complications. Checked my bp every 20 minutes. So the second day they ran the 55 grams over about 3 hours. I did question my doctor when I found out I was only getting two infusions for my loading dose and she said that she was giving me the same amount of gammulux but dividing it over 2 infusions instead of over 4 or 5. She said since I am young and healthy (I am not that young, 46). I did think it was weird but went with it. What else choice did i have. I don’t really know anything about this stuff and I was trying to trust my doctor. So it looks like i got a total of 110 grams of gammulux. I weigh about 125 pounds. I don’t know how to figure if this was enough or not.

My bruises went away and no new ones have appeared. I really think I caused the bruising because I did not take it easy on my second day of infusion. I felt really good that day. It was sunny and nice our (which is not always the case living here in MN). So i decided to clean my dirty winter car to get it ready for spring. I knelt on that right knee for quite some time while I vacuumed and shampooed my carpet in my car. Later that night the bruises showed up – the biggest on my right knee and smaller ones down on the chin (probably due to knocking my chin a lot on the car door). So I guess the lesson i learned is to take it easy on the day and a few days after you receive infusions. Even if you feel good. The hardest thing for me is to slow down. I usually am going full-speed ahead at 100 mph. I don’t know how to take it easy. But I will have to learn I guess.