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!

Just a quick reply as I also am a caretaker and will be busy with that the next few days. I'm female,age 59, no serious illness, a kidney donor 1984, live on a small horse farm and also very active. Well water but had it tested for toxins. Tested clean.
NCS and EMG are negative, all blood work negative for auto immune, sogerons, toxins, iga, ana,. Skin biopsy was positive thigh worse than ankle, R-R positive.
I first felt almost like dry skin on my legs which progressed to foot pain, tingling, pins and needles, then my arms also and hands. I have cold feet and fingers, cold like standing in a Colorado creek. I have temperature sensation loss. Face pain, lips tingling and problems swallowing.
All this happened since last July 2007. I continue to have more symptoms, now end of my nose gets cold.
Can't sleep, fall asleep easily but awaken in pain.
Thanks so much

What about mri's? and extensive blood work? Finding a doc that will look outside the box has been my mission this year. I have traveled like many here out of state and found the battle very tiring and painful. What I have learned from here is you can't give up. It just takes that one doc and the other ones you come a long that are "losers" you have to try to forget. If you can maybe send your records to some major hospitals and see if they can help you or would like to see you in person. I did that for Mayo and they didn't think they could so I went to Cleveland. Take care

your description of how COLD feet feel! That is a 'keeper' in my book.
As for the dry skin? Please explore this web site about diabetes and the skin....while many of us do not have diabetes as a culprit, a lot of the mechanisms of our complicated bodies are very similar in terms of what happens.
It is worth reading the abstract and the introduction, then skipping over to the diabetic neuropathy section. It is also fairly readable compared to many sites.
http://telemedicine.org/stamford.htm
All in all, I've always read it all to to mean to slather/moisturize those feet [maybe other parts] generously and keep an eye out for the possible nasties that can happen when one cannot FEEL what's going on down there [I mean, look at all Melody's Alan has had to go through for that very reason].
As for where to go from here? I have no new suggestions for you other than what I and others have provided. I truly wish I did!
I agree with Liza Jane about one thing? Quitting your job? Why, because of INSURANCE coverage - is why! Should you have to leave...be sure to get COBRA or the like! Continued coverage of some sort is critical should things get squirrelley down the road...New coverage would exlude such 'pre-existing' conditions and then you would be up the creek w/o any paddle. COBRA and continued coverage out of work are very expensive, but that continuance assures that you can ultimately be treated should they find a diagnosis.
And from what you have elaborated about.
IF it were ME? I might gently ask my internist friends for advice about which steps to take about now? IF the neuro structure is SOO tight there, maybe go the Rheumatologist route? Sort of a back-door approach, but an idea.
YOU have to follow your instincts on this, and obviously they are on a red-alert type of alarm. While it may take you months to get any appointments? Do it now and keep the 'replay' going on in your mind about possible causes.
For me, my troubles arose about 2+ months after finally winning a long fight with a 2 month bout of pneumonia... Every strange and little 'thing' from 'before' can and does impact our neuropathies. We are not hot-house flowers.
I can't speak for all, but the whole issue of mis-diagnosis or laziness about persuing additional testing to the best levels is too often absent among folks new here. To me, like you, IDEOPATHIC is pretty much a VERY BAD word? Many call it 'IDIOT-pathic'. Apt I believe.
Please get appts and see what happens! I mean? It can only get worse?
's - j