Sorry to hear you are part of our group - but as you can see - people are here to help....

I live in an area where I assumed the tertiary centers would be my best bet -they were not - I'm now seeing some wonderful docs at a small hospital near my home - after many numerous calls to different hospitals, checking credentials on docs before making appps with them, etc have found some really good medical people.. a first appt yes, usually takes a while to get with a specilaist.... but is worth the wait if they are good....

The spreadsheets may help your docs with genetic and other tests to order etc that they have not considered - and having them completed when you see them and letting the doc take the lead on deciding what to order is sometimes important... I've found they like to rule things out in logical order....

I had a very rapid onset of almost full body sensory and autonomic symtoms with severe loss of large fiber, also small fiber loss, additionally a great deal of axon degeneration (your heat intolerance definately sounds like autonomic symtoms) - after a slow beginning of about six months... during which time the docs didnt really do much at all except tell me I had PN.... and after which I need help to ambulate, cannot digest food due to auotnomic complications (8 years now) - have cardiac complications - and they are still looking for cause..... I've had several diagnosis - gone thru IVIG - and still no improvement... one doesnt know how this disease will progress - but you have the advantage of getting this realatively early and perhaps finding the cause and/or treatments that can help you.

If you can afford to go to Mayo - thats great! Remember - they dont put you in the hospital though - so you need to also have funds to stay in a hotel, food, and for transporation to and from etc... (Angel FLight and similar groups sometimes offer to chronically individuals free air transport - just give them a google if thats an issue).... I've also heard great things about Hopkins - I truly think it depends on the doc you get!

I wish you the best in your quest - just want to encourage you to be proactive!!!!!!! You have to be your own advocate!