Quote:
Originally Posted by Pyr2
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
|
Hi there,
My diagnosis is still unclear. I do often come back to CIDP but it doesn't seem to follow the pattern. Have you looked on the cidp and polyneuropathy website? Very slow traffic on that site but might help answer some questions.
I have autonomic problems, so heart palpitations, dizziness,o ut of breath and faint alot. I also have facial problems which are really prominent right now. It's deep within my sinuses and teeth and sometimes feels like its in my actual brain. I have eye issues at the moment and some blurred vision at times which I do worry about on to of everything else. These facial symptoms are sfn like pain, fizzing, pricking, horribleness. I also sometimes get red burning lips with dry crusting when my face os flaring. Sounds lovely doesn't it :-)