Reply To: Exacerbation – scared

June 7, 2012 at 11:32 pm

When I started IVIG I got 3 loading doses in a row and then went back in 2 weeks for another 3 days of loading doses. I wonder if your “loading doses” are enough for you? You may need more frequently. Yes, some docs do not know that CIDP may need to be kept hard hitting for 3 to 6 months at the least. My neurologist is the only one on my city who does such hard hitting of IVIG. I went from using a walker to using 2 forearm crutches to my cane to now walking unaided. I went from barely being able to brush my teeth to working in the yard but it took along time. Having to live with needed treatments does get old fast. I think you need to realize you want the best for you and it may mean several days a month having infusions.

Do you have family or good friends close by? Someone to talk to? To help out if needed?

Being diagnosed with CIDP is scarey and so is not being able to do simple tasks. I have to be careful of over exerting myself, not getting over heated, staying out of the heat and relaxing. We need to remember our body is not well and it needs lots of TLC. Please see your doctor and let him know your concerns. I usually take a friend with me when I go to appointments. If I forget to bring up a concern my friend will for me.