I wish you and your husband well. This is not an easy diagnosis. I was diagnosed in February of this year. For me I was just so happy to finally know what was wrong and that it was treatable. I didn’t even think about the long term ramifications. When I was diagnosed, I was using a four wheeled walker and was unable to get up stairs or stand from a seated position without help. I did get zingers, but I got them mainly in my feet and legs. IvIg got me back on my feet after the first day. By the end of two weeks, I was walking without the walker. Stairs and chairs were still a problem, but by April I was almost back to normal. I’ve had two small relapses, they were both taken care of by temporarily increasing the IvIg dosage. I get very few side effects from the IvIg. Some minor dizziness, slight heaviness in the chest, but no headaches, etc. that some others have reported. This diagnosis has all of us stumbling around at the beginning. I’m still not sure myself where I’ll be tomorrow. I do know that for me IvIg has done wonderful things. My dosing schedule has been very fluid from the start. My neurologist adjusts it according to how I’m feeling and what my latest EMG says about my nerves. Right now I have infusions two days every ten days. The nasty zingers are now only in my feet, they seem to get more active after an IvIg. I believe that the pain is the nerve pathways reestablishing themselves. Who knows, but it helps me deal with the pain. Good Luck…there is hope.

I don’t know if relating my expierence will help with your decision but here goes. I’ve had two 5 day loading doses of IVIG since my diagnosis in February 2013. The intial dose and then again in April after a relapse. I have since been on IVIG on a changing schedule. My neurologist adjusts my schedule to fit how well I feel and according to the results of my latest EMG. So I’ve been on 30gm twice a week every other week and then 30 gm once a week every other week. I recently relapsed again (after being taken off Prednisone),and my dosage and the frequency were increased temporarily. I had three treatments of 45gm in one week, and I now recieve 45gm IVIG twice a week. I tolerate the IVIG very well. I agree with you. I feel that the IVIG does not work quite as well as it did intially. In my case this is due to the fact that I am doing so well. Changes now seem to be so subtle. This latest round however has improved the sensation in my feet to the point where my soles are actually ticklish! I was beginning to believe that I would always have neuropathy in my feet. Now it seems I may actually have normal sensation again someday. I’m sure this won’t help, but I don’t think there is a normal. We all respond so differently to the treatments we are given. If you feel you are at a standstill in your recovery only you and your neurologist can determine what may best benefit you. If you tolerate the IVIG, then trying the higher dose may actually make you feel better. Increasing the dose in my case appears to have improved my neuropathy. This is only my expierence however. I am now waiting for the results to my latest EMG to see where we go from here. Wish me luck!