[ZEBHURTZ]

don't know what I'm doing, maybe this will work???????????

[glenntaj]

--that you also posted over at the New Members Introduction forum about having idiopathic peripheral neuropathy; hope you check back over here and tell us more (as much as you can about your history, testing, symptoms, etc.).

Just come back on and hit Post Reply, and then type as long as you want (and then click Sumbit Reply). We've got a lot of helpful people here who will share their expertise and empathy.

[ZEBHURTZ]

time on earth: 58 yrs
# of kids: 5- 4 on earth and 1 in heaven
marital status: m
ethnicity: cauc
sex: (what's that) m
as I mentioned 30+ yrs of having idiopathic peripheral neuropathy. can't even begin to count the number of doctors I've seen, I do have a list of who I've seen and what they did but it reads like a whole volume of encyclopedias.
I grew up on an apple orchard in michigan, originally my grandpa's then my dad's, started out picking apples, peaches, pears etc and finally graduated to driving the tractor as my dad sprayed the trees. because of blood testing that I have had done, have found extremely hi levels of organophosates which we used b4 the dnr and epa were even in existence. my third second opinion at the u of m hosp (teaching) believe that it is possible that it (pn) could be caused or at least contributed to because of this. regardless of how or why I got this disease, I have it now. so we don't choose the hands we are dealt just how we play the hand. and the 2 rules I live by "don't sweat the small stuff and it's all small stuff" drugs that I am currently taking are lyrica 300mg/day (pain)
ultram 300mg/day (pain)
ibuprofen 2400mg/day (pain but mostly for inflamation)
norvasc 5mg/day (I also have raynauds)
pletal 100mg/day (I also have PAD)
cymbalta 75mg/day (pain and depression)
percocet 10/325 as needed (pain)
stadol nasal spray as needed (pain)
and last but not least
metanx 2/day (this is a relatively new prescription but is simply hi doses of b-2, b-6 and b-12 which are all essential for healthy nerves and has a added bonus of making the insides of our veins and arteries slippery so that nothing adheres to them)
if anyone out there has found anything that works for them pleeze pleeze let me know as I am always looking for that magic bullet and have tried just about everything that has crossed my path in 30+ yrs to relieve, alleviate, dispell, rid, cast out, etc this disease
just one more short piece of history (much more to follow)
after trying many drs, drugs, appliances etc I came to the conclusion that we all have to deal with a certain level of pain and I just needed to bite the bullet and deal with it... then about 12 yrs ago the pain level took a giant leap upward to where I couldn't even tolerate a sheet to touch my feet at night (even though I am numb to about mid-calf I still have much pain) so I started seeing drs again and testing again and more drugs again and after about 7 yrs of trying everything they and I could find I am just biting the bullet again....taking drugs, destroying my liver and kidneys, shortening my life but without the drugs I have no quality of life, and trying not to bite the head off from everyone around me .... life is good and there's a lot to be grateful for and a lot of beauty that surrounds me but still.....

[DanP]

Zeb - ask your doc to let you try the Duragesic Patch(s)- they worked for me reducing my Neuro rated 7 - 9+ pain down to a more reasonable 2 to 4. I don't think you will find anything that will totally eliminate your pain but if you can get it controlled so you can function well then your way ahead of the game. I've been using these patches since 9 Jan 02 and I'm presently using 125 strength ... 1 - 100 strength patch and 1 -25 strength patch. The patches usually last for 72 hours but on 4-27-07 we started changing mine every 48 hours. I'm prepared to continue using this medication for the remainder of my days unless a cure is found. I'll soon be 77 years old and I've had this PN crud for 21 years...I just suffered like hell for the first 15 because the Neuros would not RX sufficient pain meds. My PCP (a Internist) asked if they had ever offered the Duragesic Patch for me and when I said no relief began shortly after starting on them. The only problem is they don't always work for everyone but what does?

I am dependent on my patches but not addicted. I have never felt high or stoned and the only thing I feel is pain relief. Constipation is a bit of a problem but that can be managed by OTC stuff from your druggest. If you are concerned about addiction I urge you to read this because there is a huge difference in addiction and dependency: http://www.letstalkpain.org/real_story/addictions.html

Good luck Zeb - hope you will keep us informed.

[george75]

Zebhurtz.
Read the above stickies. page #3 #27 reply and others too.

I am 76 have had PN for 10 years. Finally took 240mg morphine a day to get my pain down to surviable level until i cure myself. Am now using Cymbalta and it works. Never give up. Try anything.I also use Lidocaine patches on my feet.

George

[mrsD]

assuming the mitochondria were damaged, the types of
nutrients used are acetyl carnitine, CoQ-10, biotin, and
alpha lipoic acid (newer version is r-lipoic).

But after so much time has passed, I don't recall seeing that improvements would be possible.

This e-book lists the effects of various chemicals used by farmers. Do you know what you used?

http://books.google.com/books?id=V7_...K7tg#PPA568,M1

I think it would be helpful to see an environmental physican.
http://www.aaemonline.org/

If your diagnosis was done in the past, newer approaches do exist today. It might be worth seeing one now. Some toxins and many heavy metals stay in the body bound to fat. And some can be removed (not all).

[amit]

Since my PN is probably toxic - I would like to know how it started, what were the very firsy symptoms that you had and where in your body you felt it then and today. 30 years is a long time...
For me - yoga and meditation are doing great..

[ZEBHURTZ]

first off let me start by saying that I'm sorry to hear that you also have this dreaded disease and although there isn't a cure (yet) there is help both here and drs
my pn started with just plain old foot pain, saw drs and drs and chiropractors and more drs. had orthotics made, tried tens units and got the most relief from a chiro so I learned (with the help of many books) to align my spine at home by using doorways, chairs etc then as you probably read in my bio I bit the bullet and just took the pain...then it took a giant leap upward and I started looking for answers again, was diagnosed and started down the long dark path of finding the right drug cocktail that would work for me
how did you become toxic?
are you sure you are?
what symptoms are you having?
everyone is different yet there are similarities

[amit]

I used to work with chemicals in a Lab with no proper conditions. one day I started to feel like ants in my toes, a few days later - these ants were all over my body. and a while later - my skin all over my body were numb. then the pains started - muscles pains here and there. All my tests were normal including NVC, QST, MRI. All this is more then 3 years. My neuro think that because it was a rapid onset with a very little progression - it might be toxic.

I really want to know what is the origin - for meanwhile it is idiopatic.

Do you have pain all over your body or just in your legs? (I didn'y get it). Do you still work with these chemicals? if not - how long after the onset did you stop working with the chemicals?

[alexann]

This is a very interesting thread.

We live in Ontario Canada. My husband is a farmer and for yrs. he did custom crop spraying and cattle spraying for lice and warbles.

It never occurred to us that there may be any connection.

The main spray are atrazine, 24D, 24DB, MCPA for the crops.

He can't recall the name of the active ingredient in the cattle spray but the name of the spray was Warbicide.