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Old 06-16-2007, 12:20 PM #1
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My PN is "Small Fiber Painful Sensory Peripheral Neuropathy with constant moderate to severe pain, etiology unknown (idiopathic)". I was diagnosed over 20 years ago and despite the gazillion tests that have been done thru the years - a cause could never be found...including diabetes or pre-diabetes! I know there is a train of thought that feels all idiopathic PN must surely be caused by diabetes or at least be pre-diabetic. Well, I'm 75 years old and I'm tested yearly for diabetes and it still remains negative.
Now I no longer care what the cause is and my doc and I concentrate on pain management and we have succeeded in achieving very good results with the Fentanyl Transdermal System (the generic Duragesic Patch). I'm using one 100 strength patch and one 25 strength patch and changing them every 48 hours and my untreated 7 to 9+ pain is at the 2 to 4 level which I hardly notice anymore.
I remain hopeful that in my lifetime a cure will be found. General research continues but I think our best hope lies in stem cell research. Maybe someday enough of the "powers that be" will be afflicted with some of these dastardly conditions so that a change in attitude might be forthcoming....but....don't hold your breath.
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Old 06-16-2007, 01:42 PM #2
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I have severe axonal sensory motor pn with demyelination in my feet and lower legs and moderate in my hands. No cause found on tests, ideopathic, however i know it is from toxins.
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Old 06-16-2007, 02:36 PM #3
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HeyJoe, what kind of toxins do you think? We lived on a military base for 16 years and I can't help but wonder the same thing for myself.
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Old 06-16-2007, 02:52 PM #4
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Cool Smirk yep...

...small fiber polyneuropathy , had it for 3 months ( newbie ). Diagnosed diabetic March 1, started oral meds March 10, neuropathy March 15. Go figure.....
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Old 06-16-2007, 03:22 PM #5
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My neuro says axonal sensory polyneuropathy of a length dependent nature...Cause pre-diabetic (altho my GTT says high normal, but my neuro is a pre-diabetic nut) alcohol abuse (altho it started to develop before I was drinking- I was self-medicating with vodka prior to my eventual Dx of PNand exacerbated it) - but actual reason for original onset is really unknown.
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Old 06-16-2007, 03:25 PM #6
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That is a hard question to answer because at last count there were over 400 involved as well as combinations of those created during combustion. Mercury,pbc, pvc, dioxin, lead, the list goes on, as well as numerous respiratory infections caused by microscopic glass silica and puverized conrete, which of course could also set off an autoimmune reaction . Im sorry i cant be of more help, im looking for the complete list myself. If i get it ill send it to you. I had a massive exposure then a continuing exposure for 4 months.
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Old 06-16-2007, 04:57 PM #7
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Default oops!

hmm.....nide44's post just reminded me of another possible cause of my neuropathy, drinking way too much. I wasn't self medicating..just having a good time. I developed a personal relationship with Jack Daniels. Wish I had that to do over. Live and learn the hard way. Stupid,,Stupid,,,Stupid. Which reminds me, a recent article I read stated that weed helps with neuro pain. I think Monday I am going doctor shopping.
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Old 06-16-2007, 05:56 PM #8
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Default Hi there

And welcome, I was diagnose as pre diabetic at age 19,did well with that
by diet,until 8 years ago,self medicated on food became Diabectic 2.
Poor Thyroid funtioning since i was 30, 14 yrs. ago diagnosed with Sjoren's
Syndrone (Autoimmune diease) my neuro believes truma from head-on
collision. My Uncle was a Commmander in the Navy,his Neuro believed
both his PN and Alzheimers was caused by Mercury in lead based paint.
Also there is a Study about lead base paint in living Quarters on Bases.
Not to mention, let's say Agent Orange and and 400 other types of
toxins. It severly effects my feet, calves, hands to elbows and across
my back to left shoulder in big way. Darn stuff hurts doesn't it,along
with burning,tinging,ect. Please keep posting and tell us some more
about you. Sue
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Old 06-16-2007, 06:33 PM #9
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Default My full-body, acute onset burning small-fiber neuropathy--

--has never been definitively etiologized, but a post-infectious autoimmune molecular mimicry process is strongly suspected. The theory is my body absorbeda pathogen, probably fought it off, but the pathogen had a molecular structure that was similar enought oc ompnents of my small-fiber nerves that the now-activated immune system could not shut off until it basically destroyed my small-fiber nerves. (This seemed to be the evidence from my first skin biopsy, which showed I'd bascially been reduced to 2% of normal intaepidermal nerve fiber density.)

I do seem to be getting some recovery, along with reduction in symptoms--my last skin biopsy showed I was up to 11% of normal intraepidermal density. (I'm due for another one in November.)

This type of presentation seems to be rare--an autoimmune attack on larger, myelinated nerves, such as in Guillain Barre syndrome, is more common--but in both cases the prognosis is long, slow, partial recovery. I do seem to have some permanent damage, in that I now am much more prone to compressive nerve effects than "normals".
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Old 06-17-2007, 01:36 AM #10
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Quote:
Originally Posted by flsun01 View Post
hmm.....nide44's post just reminded me of another possible cause of my neuropathy, drinking way too much. I wasn't self medicating..just having a good time. I developed a personal relationship with Jack Daniels. Wish I had that to do over. Live and learn the hard way. Stupid,,Stupid,,,Stupid. Which reminds me, a recent article I read stated that weed helps with neuro pain. I think Monday I am going doctor shopping.
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