Reply To: CIDP and facial/mouth numbness

JD, it is possible you have a rare variant of CIDP called Miller Fisher Syndrome (MFS). I had experienced many of the symptoms you described and was getting worse while on IVIg. I was afflicted with a combination of GBS/CIDP/MFS in 2008 and am now wheelchair-bound as a result.

While in the ICU at Cedars-LA for Pneumonia in 2009, I was advised by my neurologist to try Plasma Exchange (PE) for my CIDP/MFS condition. I did this when I was released from the ICU some days later. Within two days of my first PE treatment my facial/head-related symptoms began to abate. But PE, like IVIg, doesn’t work for everyone.

Although many of us with CIDP or a variant experience much the same symptoms, most have additional complaints too. This is one of the factors that can make diagnosis from a doctor difficult, especially from a doctor who has not been involved with a large variety of CIDP-related patients. This was my problem when I first got GBS, none of the doctors or neurologists who treated me had more than textbook experience with the disease.

The most knowledgeable doctor, researcher (discoverer of the Lewis-Sumner CIDP variant), and professor of Neurology is at Cedars-LA:
https://bio.cedars-sinai.org/lewisra/index.html

More info about MFS can be found in these forums and here:
https://www.gbs-cidp.org/variants/miller-fisher-syndrome