You know, Wings....it is good to put in a word for the docs....they are overwhelmed....

Having worked in the system for a lifetime, I have never seen, as much demanded of docs as now....the health care system went corporate, and docs are cash cows for CEOS. I would not go into medicine now.

I have most GPs or internal med docs tell me what is going on with me is over their head and I know more about it than they do.....'Tell me what you need.' That is to a great extent scary (on the other hand I run like crazy from any doc who insists I do or take something I feel is not indicated)....my neuro feels like there are lots of things they can handle, and he should not have to direct....such as pain management....it is a bit of being a hot potato, to a great extent....right now my neuro is holding the hot potato and has accepted that position for me. I can not complain on iota.

I have had pretty good docs lately, I won't comment on the ones I had a few years ago....my condition was classifiable a decade and a half ago, at least...if not even further back...and I would have made different choices in life, based on what I new was coming in the future....I took on huge challenges, that if I had known I was sick, I would have left to the healthier people amongst us. I made financial decisions based on the assumption of relative health.

My current docs got me to where I am now, which is a lot further than where I was ten years ago....'when it was in my head'. We have to endeavor to get selected patients past certain 'gatekeeper' tests. Gatekeeper tests are usually only abnormal in severe disease or in the more common diseases....most diseases are picked up on the usual metabolic panels, rheumatoid panels etc....a lot of neuro diseases is picked up on EMGs, MRIs etc...

I was very fortunate to get a tilt table, due to a very slight abnormality on a max (Bruce treadmill) stress test, usually not done on folks....or I would still have 'fibro and depression' (not to 'dis' those diagnoses, they are valid, but, not as often as diagnosed). Those abnormalites lead to abnormal epidermal nerve fiber biopsies, an abnormal muscle biopsy, an abnormal thermoregulatory sweat test etc........the solid clinical proof, that my afflictions were physiological and not 'in my head'.

At least now, thru the process of ruling out, I know I likely have a heritable condition, will need splints, antispasmodics etc....and I know to watch for this in my kids...likely a 50/50 chance.

Within a few years, if not months, I will likely have a locus for this, and then I will know for sure, what, name this has or what name they decide to give it.

Not all patients need to go beyond gatekeeper tests. If one has a clinically provable neuropathy----I think it is reasonable to pursue all available tests to uncover the cause....many neuropathies are treatable and those patients should be treated, their conditions managed...

For those that are not---those folks deserve to know what they are up against, and what resources they will need and what challenges are reasonable to undertake...especially challenges that take decades to complete....and resources should be made available to them.

No one should be told their axons are degenerating for 'unknown reasons', even if it is heritable and not able to be stopped, people do have a right to know and have resources opened up to them.

Oh and we have ICE, our roads are not concrete or asphalt right now, except in a few places, and on the I system....our rural roads and even city roads are covered with hard ice with sand imbedded in it for traction...with interspersed patches of concrete. As snow gets packed down over days and days, it gets to be ice....it is like ice with kitty litter on it, with road poking thru here and there. If you can keep one tire on concrete you do OK...you get used to driving on it....we won't have any ice storms for a while now...it is too cold...we have 3 to 5 inches of fluff coming tonight.....I don't know what is worse, that blowing around or the 14 inches of heavy snow we got last week. Ice storms that plague the areas south of us more often are worse....altho we get more ice storms lately with warmer winters....THIS is not a warm winter....this is what I remember as a kid....

As far as cold, once it is below 10, it all feels the same, it is just a matter of how fast it feels the same....

Boogers freeze pretty fast at zero and poke the inside of your nose, and your jacket makes weird noises, cracking noises, at around zero. Sooner or later, you will die if you stay out there for very long....but staying inside all the time, makes one insane. This is why I post wierd things....walls are closing in....and I am 25 miles from the closest indoor mall. Eh, plus I am not into shopping all that much right now. I wonder if my tongue will stick to the mailbox???