Fanfaire, in testing brought up some tests?
 

Somehow I have escaped the tests mentioned...the tilt one and the sweat one...So I looked them up. Below are sources of info about them, WOW!! Am I glad I'd not gone thru them? I'd have been sick during and after either.. Not a potentially pretty sight!

Here goes:
http://www.iasp-pain.org/AM/Template...ContentID=2188
MORE than one should ever need to know about the tests? But, useful in other ways....

This next is or should be near and dear to our hearts, as it's how INSURANCES view the procedures....
http://www.aetna.com:80/cpb/medical/..._499/0485.html
Soo, advice to all? Read, learn, become confused, read more...sort it all out in your mind..then do more of the same.

We will ultimately sort out all this mess, whatever it is? - j

My insurance has covered ALL my tests, and it is a major insurer.

Autonomic testing is done at research facilities. Few places other than research facilities likely have the labs. Several very 'serious' entitites such as MSA, (multiple system atrophy) are diagnosed via autonomic testing and thermoregulatory sweat tests (among other things).

Finding out sudomotor abnormality patterns is important, and my case is a bit puzzling as it is global anhidrosis. Knowing I have that, greatly reduced my chances of dying from heat stoke. I had no idea that I did not sweat properly.

I also had no idea why I had presyncope. Presyncope can be due to cardiac reasons or due to neuro reasons. Actually I had no idea I even had presyncope, I just felt awful after being upright for a while. I also know that I get presyncope when I am thru exercising. So it has given me useful information, and probably contributed to research.

Small fiber neuropathy is for some, so much more complex than burning feet...(not that burning feet can not drive one crazy-they can.) When the small fiber neuropathy affects the autonomic nervous system, then it can cause some more life threatening complications, altho, in general it does not.

Thermoregulatory sweat testing and QSRTS can also determine where a lesion exists.

I think, in general, a lot of this is not necessary for people who don't have the complex symptoms, and have a 'cause' for their neuropathy, such as autoimmune disease or diabetes. For idiopathic cases, these tests, can sometimes lead to the etiology of the small fiber neuropathy.

Small fiber neuropathy is really an enigma. It 'comes with' so many diseases, and can even preceed diagnosis of these diseases by years, such as in paraneoplastic sensory neuropathy and in diabetes (which gives the molecular mimicry thesis some traction). I don't know where molecular mimicry plays in with diseases such as ALS, some of the muscular/myotonic dystrophies (which are known to be genetic) and also the Multiple Systems Atrophy, PAF family or other entities that have both central and peripheral disease.

You are right, not every one needs every test, and not every test is worth doing for every patient. Symptoms do dictate the decisions docs make. If a person presents a compelling reason for wanting a test, the good doc will either explain why the test won't help, or do it.

I wonder if they will sort this out in my lifetime! I know I have reached the end of the internet within a research facility, and may still end up with an idiopathic case, at least for a while. New symptoms may manifest as the disease progresses which point docs in new directions.

Diagnosis can take years....and it can ellude even the brightest physicians and researchers. That is frustrating for all of us.

One more thing. I think LizaJane has spread sheets that are good for almost all cases of neuropathy, except some of the hereditary cases, which at this point, have no simple solution and get into some pretty unusual stuff, that you only get if referred to some research facility that has an interest in those diseases. I am sure when those tests get identified, those will be on her spreadsheets too!

I am wondering if they will ever draw an inference from spinal injury via any mechanism, from accident to anesthesia to surgery as to whether or not it precipitates SFN. (Likely no one is going to want to say that, and funding for that kind of research will be sparse.)

Spreadsheets--I put up the common heriditary neuropathies on the spreadsheets, including the variants of Charcot marie Tooth, and I'd be happy to put up a more extensive list if anyone has a source they want me to look at. This is what's up at this time:

Familial Amyloid- TTR (genetic amyloid)
CMT screen (charcot-marie-tooth)
MPZ
connexin32
neurofilament NFL
GDAP
EGR2
Periaxin

HNPP-PMP22 DNA sequencing pressure palsies
HNPP-PMP22 deletion/addition

Went thru the links but am too out of it to make much sense of them. Am saving them to read later when my brain maybe works better. :D

fanfaire
:cool:

Yikes....... I just read that autonomic testing site as posted by Dahlek.

In exactly 10 and 1/2 hours I will be having some of these autonomic tests done. Don't know how I'll cope being locked in a room to sweat it out and that tilt table test sounds nauseating!!!

I asked if I could eat before going for the tests and they said 'sure you can do anything'. Would eating beforehand be wise?

YIKES was just my own
 

reaction....I am glad I aced the 8 outta 10 criteria so I didn't have to go thru it? Not that I think it's done near me, other than hiking thru traffic up to Hopkins.
I will say that that autonomic shut-off of not sweating has been a symptom of my condition from the get go? Also no 'body oils' are being produced or show on my skin. DRY DRY DRY!.
Megan Since I've not had the test, I don't know about eating before? But if it lasts a while, I sure would want to KNOW clearly as I could get really 'thungry-grumpy' during such a test without food! I mite even get soo grumpy as to threaten to BITE people? Plain and simple, it's eat or pass out?
Hope you are sailing thru it and getting results you need to get to get treatments! That is, after all, why we all do this 'STUFF???'. At times I wonder why, therefor I dig... Hugs and hope! - j

ps: Do please let us know how it went, or not? You know what I mean...

Eat lightly, if you don't eat you will be hypoglycemic....and the tests are not bad....really. You do not want to be dehydrated either, so drink normally.....Tilt table is not bad at all unless you have autonomic dysfunction...and if you do it hits u fast and they fix it fast.

Sweat box test is like laying at the beach....

You have nothing to be concerned about at all.

Also, you are not locked in the sweat box....they talk to you, ask you how you are doing, come in to take temp, etc.....you will likely turn purple, and that will be a good thing...except you will be purple for a few days, LOL.:D

By far, the worst test I ever had was a left and right cardiac cath...and I understant the EPS I may have to do in January is similar but a bit more 'challenging'. I love the word, 'discomfort'.

Discomfort is pain....I just tell myself to relax and not panic.

The tilt table moves slow....it isn't like they rock you back and forth....it is mean't to challenge your neuro system to react to postural change....not your vestibular system....it is not anything like an amusement ride. I puke on those except for a ferris wheel.

Man my typing is really starting to $uck.....you would never believe how much I edit and I still miss stuff......:(