Reply To: New to CIDP I Think

April 20, 2014 at 8:22 pm

Hi C.P. and welcome to our forum!

I assume from your post that you live in the Tampa area, please correct me if I’m wrong. There are some experienced CIDP specialists in that area, please see this topic for more info:
http://www.gbs-cidp.org/topic/cidp-friendly-neurologist-in-orlando

Your symptoms sound a bit like mine and I have CIDP and a variant called Miller Fisher Syndrome (MFS). It is the MFS that I think you may want to look into as a possibility. There is a good booklet about it here:
http://www.gbs-cidp.org/wp-content/uploads/2012/01/MillerFisherSyndrome.pdf
Additional info and other resources can be found here:
http://www.ninds.nih.gov/disorders/miller_fisher/miller_fisher.htm

Another possibility might be Diabetic Peripheral Neuropathy (DPN). An estimated 60-70% of Diabetics suffer from peripheral neuropathy. Read a DPN informational brochure here:
http://www.neuropathyaction.org/patient_resources_news/brochures_downloads.htm
Additional info and other resources are here:
http://diabetes.niddk.nih.gov/dm/pubs/neuropathies

If it seems you may have MFS and you want to confirm or deny it, you should contact an experienced neuromuscular doctor. Based on what I have read from other Florida residents, its common practice there for doctors to re-run tests that were just run. I don’t understand why that is, but apparently it is to be expected in that State (hopefully insurance will pay for the duplicates).

Wishing you the best in finding a good doctor.