Hi Mere

I had the autonomic battery, including the thermoregulatory sweat test (flunked totally) the tilt test (passed out) valsalva (cardiac innervation issues), QSARTS (abnormal) any way, I had this done BEFORE they did the skin biopsy. The found a lot of abnormalities and that prompted them to do the skin biopsy.

Autonomic issues can result from other things than PN, but I think PN is usually the more common cause.

I did not get any answers as to WHY I have PN. I still don't have what I think is a satisfactory reason. The WHY question is a quandry that plagues most of us.

There's also the definitive diagnoses of the cause, that you don't agree with, it is just one factor of the cause, & probably exacerbated the symptoms - but the docs stop looking because they've 'solved' the problem.
I swear I had symptoms waay before I started to drink and was drinking to Rx myself cause the HMO docs hadn't helped.
When I finally was able to get a proper Dx from a good neurologist, that was the pigeonhole that I got stuck in.
'AN' alcoholic neuropathy - go no further, problem solved!

Thanks Bob, I have also found over the years that Docs like to 'pigeonhole' me also. With me it's fibromyalgia. Yes, it is a possibility, but I usually have an increased sed rate and C-reactive protein. From what I know, FMS does not cause inflammation, nor SFN. Oh well, just an easy out for them ... I guess.

All that did was give the MD's something to point to.. the ever elusive CAUSE for neuropathy. You know it isn't the cause , we all know it isn't the cause - but it's like the Holy grail to them...

these are the stupid doctors...

--that viral pneumonia aspect may be worth exploring; a number of people have developed autoimmune and/or autonomic conditions after an infection, through the molecular mimicry process. There are well known "infectious prodromes" for conditions such as Guillain-Barre syndrome, for example.

Take a look at:

http://neuromuscular.wustl.edu/autonomic.html#primary

I think in general PN is multifactorial....first genetic susceptibility.

Then a trigger. Some of us have multiple triggers.

I had a severe car accident, and Lyme. I also think that severe emotional stress plays in as well.

One of my adoptive daughters has Crohns, and she has just moved in with us, and her symptoms are identical to mine, except for the stomach pain! I think the young lady has neuropathy too! She says, she thinks the neuropathy happened after her epidural for childbirth. Makes me wonder. My neuro is totally against any kind of spinal picks, and I had 3 of those when I had my nerve root blocks.

It seems like when we tell people we have PN, there is no real understanding of the misery of this condition and it is easier to tell people you have some other better understood condition. I admit to telling people I have a 'lupus like disease that is attacking my neuro system.' People just say, 'Ohhhh, I see'. In general, it is better to not even mention I am sick....I 'look too good'.

Cyclelops and Glenntaj, Yes, I do feel that there was a 'trigger' - probably the monoclonal virus. In terms of appearance, people have always made the comment "You look so healthy". Maybe the flushing helps my appearance in that regard. It does rather **** me off though if I am feeling poorly and someone says that. It seems condescending. If people ask what my problem is, I will usually tell them that I have a type of lupus that affects different parts of my body.

I do have fibromyalgia and have had that diagnosis for years, but I don't mention that to anyone because 'erveryone' now has fibromyalgia. If people are overstrssed or tired I hear "I must have fibromyalgia". Don't get me wrong... I am pleased that there is a new found awareness on FMS. But for crying out loud, some people can be so easily jaded into thinking they have a serious problem... perhaps after watching a Lyrica commercial and thinking "oh yes, I do have some tenderness in my muscle there (pointing)". I really don't think that FMS is as prevalent as is seems. I swear, just a few weeks ago my neighbor said she was a bit run down and tired and that she must have fibromyalgia. I wanted to laugh in her face and say "are you kidding?". My husband just looked at me and rolled his eyes.

Mere

Mere

I too had muscle 'knots/spasms' well long before my own immune thing went into full speed? I'd learned how to deal with them and what to do, vis-a-vis, massage, heat, cold, accupressure? The WHOLE GAMUT! I THINK? I should be grateful that I skipped first base? W/the Fibro diagnosis? Fibro vs, muscular/nerve trauma and rehab are far different things!
I think I should go and see if past docs are still alive? And if so...go kiss their shoes [IF I could get down to do that? Or at least facial cheeks?] I must consider myself super-lucky that I did NOT get the 'fibro' attached to me. That sounds like a bad thing to say? But truly it is not, as Fibro was never a key issue. Even tho, I mite have 'fibro issues'? That has never ever been an aspect or issue raised. Why one vs the other? Doc training? Patient training the doc?[not likely, but hopeful?] I don't know.
But, can we all back up a bit? The complexity of the diagnoses results from the testings? As the StLouis Site demonstrates...there are a heap of possibilities-KNOWN! Unknown? Yet to come. The latter part is the scary part? It's growing every year, the combinations/permutations are getting wider and broader and a whole heap of education has to be done soon by neuros to offset the more expensive wave of immune diseases. The mis-diagnosis is well documented here, and it scares me silly! [My polite choice of wording] WE DO NOT DESERVE THIS DEGREE of IGNORANCE among our key physicians! That ignorance leads to extraordinary and at times? Bankrupting expenses!
ADDRESSING Triggers? Yep, I had them? Somehow having pneumonia for an extended period of time, AND being on a variety of antibiotics [known for possible PN S/E's?] have taken their toll? But I feel as if myown system was like one of those 'dominoes chains' set up to fall.....this way? or That way!
And, all the dominoes are still being sorted out, years later, but I suffer the consequenses... The odds are great? If'n it were a real LOTTERY? I'd be really, really rich! And then some?
Hey, once that old 'immune ball gets rolling'? It's the pinball effect-don't know where it'll end up.
Wow, It STILL feels good to beat my head against a solid surface now and then? Those endorphins? Super!
No blood was drawn as a result of this post! 's -j

Good Lord Cyclelops, you certainly have autonomic dysfunction, no doubts there - yeah, I know, how profound...duh.

It just gives me the willies though to think that they will not have any answers for me... How can I correct the problem if I don't know the reason? You are right in that I am not the only one in this quandary. Maybe there are no answers for me. Seems like someone would know after all this time.

Mere