Reply To: New to Cidp? I think?

Hi Mike and welcome to the forums.

My symptoms started similar to your description and I had GBS/MFS (Miller Fisher Syndrome). MFS is a rare, acquired nerve disease that is considered to be a variant of GBS. It is characterized by abnormal muscle coordination, paralysis of the eye muscles, and absence or impairment of certain head and/or facial abilities, such as speech. It can affect breathing as well.

Here is some info about MFS:
https://30g7el1b4b1n28kgpr414nuu-wpengine.netdna-ssl.com/wp-content/uploads/2012/01/MillerFisherSyndrome.pdf

Has your Neurologist suggested Plasma Exchange (PE)? This is a way of removing the attacking antibodies from your blood. PE was the main treatment that worked for me. IVIg never did much of anything in my case. There are numerous forum threads discussing PE, simply do a forum search for them.

Here is a doc that might help you and your Dr better understand what is going on in your case:
https://30g7el1b4b1n28kgpr414nuu-wpengine.netdna-ssl.com/wp-content/uploads/2013/02/AcuteCareICU13.pdf

Wishing you the best of luck with your recovery.