Hi there - too long of a story to go into, suffice it to say three years of loads of symptoms - not all classic CIDP. I have a lot of cranial nerve pain, autonomic involvement and oligoclonal bands in my spinal fluid which indicate central nervous system involvement. In fact my CNS involvement really outshadows the peripheral pain to a large degree- daily migraines, facial pains all over, low stress intolerance, brain fatigue, etc .

My dr. still thinks there is an underlying cause and I start a PICC line for Lyme tomorrow. Im skeptical. I also show signs in my lungs of old sarcoidosis but its not active now - at least not in the lungs. I did my first round of IVIG and felt no real improvement. I have another one coming up in three weeks.

Just wanted to reach out to any of you who feel that your CIDP is either secondary or who have a lot of CNS, facial or autonomic involvement like me.

Thanks! L