Reply To: Long term things with CIDP

June 2, 2016 at 4:11 pm

I was diagnosed Aug 2015 with CIDP. My major complaints have always been about the pain in my low back, joints and sudden bouts with maintaining stamina and when I get sleepy/fatigued; it’s a big deal. I spoke with my neurologist about these annoying issues being a long term struggle. He explained to me that it is very common and that I may never get rid of some of these symptoms and that rest and more rest will always be a concern. He did stress that if a continual loss of strength and balance began again then he would have to adjust the treatment again. Currently, I am on every 2 wk IVIG but will soon change to ever 3 wk for awhile. Today, June 2nd, marks the 1 year anniversary of the first onset of symptoms prior to my diagnosis in Aug 2015 (I was reliant on walker then wheel chair). I only occasionally have to use a cane for really long distant walking or when I’m have a temporary onset of weakness. The neurologist has reminded me time and time again that my recovery will be longer than what I expect it to be. I do hope you continue to heal and improve. Warmest wishes to you.