Hello,
This is my first time posting on the site. I was diagnosed about 6 months ago with CIDP and have been getting IVIG once a month since diagnosis. I feel like i have been getting slowly worse, and i have been having some issues with speech. I went through a 4-5 day period with aching/burning tongue with some residual pain. I was wondering if anyone has similar issues and if a particular treatment has worker better for you. I just went back to my neurologist, and he wants to move my IVIG treatments to every three weeks instead of monthly. I have read one research paper that says 10-20% of CIDP patients have Bulbar and Cranial nerve involvement. Please drop me a line if you are one!!!
Gary
My Stats: 42 yrs old, EMG showing demyelination, no reflexes, normal CSF protein, one abnormal oligoclonal band in CSF, muscle weakness and atrophy
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