42 days life span for IVIg my be the maximum but for many the time between each treatment is different. My infusion center put me on a Wednesday schedule. Once I got into the rythem I give them my schedule.I stick to as close to 28 days as practical. If not they would put me over 30 to 35 days and I really saw a decline the last few days and took me a while to regain what I lost. I think I now have the time and dose that keeps me going. I wish it was symptom free but that’s too much to expect. Help work out your own schedule based on how you feel.

The week that I first started feeling the effect and before dianosis I also had a bad shortness of breath. Went to Pumotoligist and said had ashma. Went to Neurologist and said I had CIDP. Both said no relationship. Just to much related for me. Again just funny stuff we deal with.

Every one is different. For me I require 28 days. If I miss this intervel I really feel the results, even one or two days. Also the premeds I get (Steroids) affect me and my moods. I am short with loved ones and other feeling. I have now been able to spot and deal with better. I wish it was easer but some day maybe.

I think most of us realize that similar can happen here with the new health care bill. My hope is someone would realize that those affected may know best. My hope is a strong response to the survey that was sent out by this foundation and the documentation of success will be used appropreatly. I had my IVIG this afternoon and know how much it does for me and how I look forward to it as the relief I get. My Neuro told me she won’t want to take steriods unless absolutely necessary and doesn’t want it for me. This said. Thank you GBS/CIDP foundation for you efforts in what you do.

In hindsite I think the same thing happened to me. For about a year I had some pain but mostly tingleing in my neck and sholders. My Doctor ordered a stress test and heart workup. Everything was OK so I delt with it. Latter Pain started in my bladder and other places and then got worse. After the usual MRI and spinal It was determined CIDP. I have been on monthlY IVIG for 11/2 years and doing fairly well. The worst part of all this was not knowing and confusion. It took me a year to find this forum and now I deal better with things. Get the test and then start treatments if necessary and start the process of healing.Gene

I also have had CIDP for a year and half. My first issue was not weakness or anything related with feet, legs or hands.Mine was pain in the bladder,stomach.I get up each morning and struggle to the couch. I take my 50mg of Tranadol once a day and then manage fairly well. After reading so many post the one thing I have learned through this organization of people is the varity of ways this stuff effect each and seems to change daily.

when first dianosis my Neuroligist told me she hoped to at least stop any futher damage with IVIg and not go down futher. Now I know what she was thinking. She was trying to be very cautious.For months each time I felt hororable I assmued IVIg was failing. After 14 months I now feel at least lousy but consistant. Now I begin seeing improvements each time and hope some day to feel pretty good. I read many post of people who have difficulty with the treatment. I have been blessed and no side effects and feel better after and now look forward to my time of relaxing for six hours as I let the benidrel work. My biggest issue with all of this was being grumpy and short of patience with my family when I didn’t feel well. It’s an issue to monitor. Good luck as you progress.

Gary, I was dianosis in Mar.09. I had some difficulity going to several Doctors as all the pain was in by bladder and it seems most text books indicate pain should be in your arms and legs. I had none. Forturnately I findly found a good Neuroligist that when straght to the cause and started me on Neurotin,and IVIg every 28 days. This month being one year I seem to better understand what is happening and deal better then I once did. The most difficult thing for me was on my bad days I assumed my IVIg was failing and worried alot. I really suggest you ask lots of questions and hope you get lots of support. Best of luck.