I do know that there are web sites that are useful?

url-http://neuromuscular.wustl.edu/alfindex.htm-url Is one of the most extensive available to mere mortals… Take a look see? [hope I did that rite?]
I’ll go searching and see what Insurance Co’s seek as key info for diagnosis…some good reference sites have evaporated off the web for diagnostics and what you need is to know what type of neuro to see and what tests you should be going thru.
The reasons for Such CIDP progressions causeing concerns are: The breathing thing? Essential for life?’; the esophagus issues? Being paralysed here isn’t again a good thing; nor are heart, stomah, digestive or bowell issues. AND, they can and do occur.
Two keys here only YOU can assess. HOW FAST is it moving? Does it come and go? Or just what I call: Marching up your body?
Now, as for talking to docs about this? I always take a small note pad or junior legal pad..on ONE page I LIST all my concerns in priority. And short clue words as to why….W/A new doc? Hit only the first 2-3, and if the doc seems open work your way down. I’ll bet IF you back up your concerns w/legit sources such as medscape or NIH research? The doc will know you aren’t messing around with things such as a pseudo ‘Vitacure’ etc. Get my drift? YOU ARE SERIOUS about getting a diagnosis, and sometimes it’s not absolute. No matter what you do.
As for going to the Mayo? The USNews and World Report has on line the top hospitals in the country-look up neurology depts? And you might find docs much closer who can help you. I live in the metro DC area, and was ready to go to Johns Hopkins to get help, but I got it at Georgetown U Hosp., nearby.
Going to GU is a long haul for me w/this stuff? And, I got all of the testing done w/in 10 miles from where I live [Tho some blood and spinal workups were sent to Mayo for analysis?] It makes it soo much easier?
My reasoning at the time, was, IF I don’t do it while I CAN, I mite not be able to get a diagnosis, or worse.
I’m not worse. So there!
OK THATS about diagnosis? As for the insurance?
Get out what’s in print from the company is a start-get on their web site and find out truly-then call and call and call! IF anything is denied? Learn ahead of time about the appeals process – I’ll bet you will win with knowledge behind you! Go for it!