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.

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

--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".

is what my SF neuro specialist has said in my case as well. Before my acute bodywide onset, I had a pretty bad upper respitory infection for like a month. But... not known to me at the time I also had a long standing gut infection with H.Pylori bacteria which was diagnosed by biopsy.

I have managed to find quite a bit on the internet linking helicobacter infection to Guillian Barre like syndromes. There could even possibly be a slight nutritional component to mine as well, due to the helicobacter infection. I was iron anemic on my blood tests, and the first time I supplemented with B12, I passed out in bed and slept for like 3 hours from 10 to 1pm which was extremely unusual. I also remember on that day that I also for some reason couldn't move my arms after I took the B12.

Just to add one more thing... I have had PN, both motor & sensory in both my legs due to DDD & trapped nerve roots from herniated discs long before I had my acute bodywide onset of SF PN. I just never knew it had a name.

To put it quite simply, I am a diabetic for 20 years. I was quite stupid in that I ate myself silly, didn't work out, and as a result I am diabetic.

Could have stopped the eating years and years ago, but food is what I used to self-medicate. Never drank, did smoke a joint once in a while at the age of 24, but once I realized that I got hungry after that, that's all I needed!!! Stopped smoking joints.

Lost weight, gained weight, still self medicated with food. Couldn't stand my mother, loved my father, I ate and I ate.

Then at age 40, got diagnosed with diabetes. Did I listen to what the doctors said to me? Did I lose weight?? Hell no!!!

And my son's asperger behavior, well forget about that. Self medicated with food. But when I reached my 50's, well something must have happened because I took a good hard look at my health and decided "no more stupid eating". Became healthier, looked much better. But..... too late for me. Developed neuropathy anyway. So my sugar was controlled for over a year when I developed neuropathy.

Guess all those years of being stupid, well, they really did me in, didn't they!!!

Thank god, I'm not stupid anymore.

So that's my story!!

Melody

I have a bilateral, asymmetrical, familial small-fiber neuropathy, with some large fiber and autonomic involvement. The origin appears to be hereditary, form an autosomal dominant gene. I suspect that toxic exposure to compound varnish may have been the trigger for the condition.

And moving on to . . . Jack Daniels, weed, whatever. I would encourage anyone who has any traits or habits pertaining to addiction to be careful with marijuana. It can be powerfully psychologically addictive. On the other hand . . . there appears to be no question that it can be an effective pain reliever.

I tried it as my condition deteriorated, but I found it to be not helpful at all. In fact, it tended to intensify my pain sensations. I have an MD friend who is a BIG advocate of using it for pain relief. He is a chief of an oncology dept. and has been doing some research on the side (he is also a huge fan of integrative medicine as preached by Dr. Andrew Weil). I think he just completed a study and has published his results -- may have been a pilot study. If anyone is interested, I can find it and post a link.

rafi