Neuropathy News LetterPosted by john h on 5/27/03 at 18:11 (120060)
This is from a letter in the respected Neuropaty News. I have no idea if it might help PF but here it is:
'I would like to comment on a letter in your December 2002 Neuropathy News from Charles Durham regarding using wintergreen alcohol and aspirin. After checking with my pain management doctor and the getting the go ahead, I used it and it works! The only change I made was I put the mixture in a spray bottle and use it constantly during the day and I also put it on my arthritic joints and it helps. I thought others might be interested in this solution as it not cost an arm and a let to try. Thank you. Joane Johnson'
Brian: This also from Neuropathy News: 'We have a 10 year study that says 'yes' there is a direct oorrelation between agent orange exposure and peripheral neuropathy'.
Re: Neuropathy News LetterBrianG on 5/27/03 at 19:16 (120071)
I had my Neurologist test me for Agent Orange, he said I was negative. At the same time he also checked me for heavy metals (lead, etc) everything was negative. How can a simple case of PF hurt so much ?????
Re: Neuropathy News LetterKathy G on 5/28/03 at 09:40 (120128)
Doesn't it amaze you, Brian? There are days I just sit and wonder! Thanks to these boards, (Thank you, Scott), I no longer think that I have some terrible disease but I sometimes wonder how something can hurt so much. And I don't have nearly the problems that you have! What I will never understand is why so few people know what PF is or have ever heard of it!
Re: Neuropathy News LetterBrianG on 5/28/03 at 20:50 (120219)
Kathy, you should have seen what I put my HMO throuh, after my original PF diagnosis. It was well before I ever came to this message board. My Pod could not cure me, nor could he tell me exactlly why I had gotten PF. I made them jump through hoops, ruling out everything I could thnk of!! And now, after the failed EPF, Prolotherapy, Accupuncture, Meds galore, 2 ESWT treatments, MRI, bone scan, every conventional thing you could think of, and still no cure. The diagnosis remains the same, and I've finally come to live with it. I only hope it doesn't develope into something worse, like RSD, Fibro, etc.
And your right, coming to this message board has helped me to accept my PF, and know that there are many others out there, just like us!
Re: Neuropathy News LetterEd Davis, DPM on 5/28/03 at 21:41 (120229)
Just curious -- how can a neurologist test for agent orange so long after exposure? Metals accumulate and persist but I would be surprised it that is the case for agent orange -- it would have potentially been a factor at the time of exposure so knowledge of the history of exposure would be valuable.
Re: Neuropathy News LetterBGCPED on 5/28/03 at 22:07 (120231)
Brian, I dont recall if you have posted this info before, what is your foot function like? what shoe and or inserts do you wear? if you can post a few digi pics standing barefoot on hard floor front, back views and orthotic you use I may be able to help. You have been through a lot but you would be amazed at how many people have improper inserts and or shoes etc.
Re: Neuropathy News Letterjohn h on 5/29/03 at 14:51 (120302)
Ed: I had some exposure to agent orange as I was sometimes right behind the dispensing C-130's amd on occasion landed in areas that had been defoliated. I have never noticed any effects although my wife might not agree. I have seen some crop dusers who's skin and complexion had almost turned yellow after some years. These guys used to fly in open cockpits and were really sucking in the chemicals. I would like to read some after effects of guys who did a lot of crop dusting. They also use helicopters for crop dusting and the airflow from a low flying helicopter brings the air from the ground right back into the cockpit unless you have your speed up. One time I was playing Santa Clause and dropping styrofoam bits from a helicopter in Vietnam (our version of snow) and the darn stuff all flew back into the helcopter. It had styrofoam in it for the rest of it's life. Santa did make it down the hoist however.
Re: Neuropathy News LetterSharon W on 5/29/03 at 23:29 (120334)
When your neurologist tested you for Agent Orange, what exactly did he test for? I ask, because as a child I was exposed to a very similar combination of chemicals, including dioxin. I have a copy of that Neuropathy News, but I didn't find info that was specific about which chemicals in Agent Orange are supposed to cause neuropathy.
Re: Neuropathy News LetterBrianG on 5/30/03 at 17:54 (120448)
Ed, when I was tested it was back in 1999, about 25 years after exposure. I don't recall all the particulars, but the heavy metals test was done by a 24 hour urine test. The same Neurologst did blood tests and an EMG, for the agent orange exposure, Lyme disease, R.A., and Neuropothy's. He found nothing.
What gets me is that I know I was exposed to Agent Orange, twice. Once in VietNam, which would have been minimal. The 2nd time was in Hawaii, working for a gentleman rancher (88 head of cattle). I helped him spray a lot of 24D & 245T (I think) on the ranch's weeds. It's the civilan version of AO. He was very sloppy applying it, walked right through what he had sprayed, in jeans. He was dead from cancer within 10 yeras. I think it was the weed control (AO). Anyways, I still don't know why it didn't show up in the blood test, but I'm positive I was exposed to it. Maybe it disapates in the body, after a certain amount of time???????
Re: Neuropathy News LetterBrianG on 5/30/03 at 18:10 (120449)
I really have no way to get the 'impressions' to you. I'm using WEBTV, which is not much more than a toy!! My feet & heels look pretty normal, also a normal arch. I now use Birks at home, and good sneaks when I go out (NB-854, Asics Duomax gel and NB-855). A couple years ago, I finally got a good pair of orthotics that I can wear, SporThotics, by Langer. Before that I had 2 pairs of ice scrapers (STJ orthotics) that I'm sure did more harm, than good. I also used to use very cheap hiking shoes before PF. Not to mention 15 years of steel toe shoes at work, which ended about 5 years ago!
So, to me, it would seem that I'm finally on track with my footwear. It's just that I've had the PF so long, my brain has probably reformulated itself so that it will always give me pain!!! :*(
Re: Neuropathy News LetterBrianG on 5/30/03 at 18:29 (120450)
I went to the Web, and found the ingredients for Agent Orange. Hope this helps.
Cut & Pasted:
Agent Orange And Related Issues
The Vietnam Conflict
An estimated 2.6 million personnel served within the borders of South Vietnam and in adjacent waters.
Agent Orange was a herbicide used in Vietnam to defoliate trees and remove cover for the enemy. Agent Orange spraying missions were flown in Vietnam between January 1965 and April 1970. Shipped in orange-striped barrels, it was a reddish-brown liquid containing four chemicals: 2,4,5-trichlorophenoxyacetic acid (2,4,5-T), 2,4-dichlorophenoxyacetic acid (2,4-D), cacodylic acid and picloram. The 2,4,5-T was contaminated in the manufacturing process with dioxin. Several herbicides were sprayed in Vietnam at different times?during different years as well as during different seasons because of the variety of vegetation and environmental conditions.
The history of herbicides for military use dates to World War II. During the early part of the war, interest arose in chemicals that could be used for crop destruction. Two chemicals were developed as a result of those early efforts -- 2,4-D and 2,4,5-T. Although neither chemical was used in World War II, the value of their use in weed and brush programs was recognized, and both chemicals have been used widely throughout the world since the 1940s by farmers, foresters and homeowners.
Medical Services For Vietnam Veterans
VA has offered special access to health services and studies since 1978, when it initiated a medical surveillance program for Vietnam veterans with health concerns. By 1981, VA offered priority medical care to Vietnam veterans with any health problems which may have resulted from Agent Orange exposure. That program continues today.
Special Compensation for Disease
As with other veterans, Vietnam veterans with disabilities incurred or aggravated by military service may receive monthly VA compensation. As knowledge has grown from studies of Agent Orange, some diseases that may not have become evident in service have been recognized as service-connected. Based on clinical research, the following diseases are now on VA's Agent Orange list: chloracne, Hodgkin's disease, multiple myeloma, non-Hodgkin's lymphoma, porphyria cutanea tarda, respiratory cancers (lung, bronchus, larynx and trachea), soft-tissue sarcoma, acute and subacute peripheral neuropathy, prostate and adult-onset diabetes.
In addition, monetary benefits, health care and vocational rehabilitation services are provided to Vietnam veterans' offspring with spina bifida, a congenital birth defect of the spine. VA presumes that all military personnel who served in Vietnam and who have one of the listed diseases were exposed to Agent Orange.
VA Response To Concerns About Agent Orange
? VA developed the Agent Orange Registry Examination Program in 1978 to identify Vietnam veterans concerned about Agent Orange exposure. Nearly 300,000 Vietnam veterans have been provided examinations under the Registry program as of December 1999. VA maintains a computerized registry of data from these examinations. Registrants receive periodic updates on Agent Orange studies and VA policy.
? VA's Advisory Committee on Health-Related Effects of Herbicides was established in 1979 to examine issues surrounding the possible health effects of herbicides on Vietnam veterans. VA also established the Veterans' Advisory Committee on Environmental Hazards, consisting of non-VA experts in dioxin and radiation exposure as well as several lay members, to advise the Secretary on the results of Agent Orange-related research, and regulatory, administrative and legislative initiatives. Since passage of a 1991 law (PL102-4), which directs VA to request that the National Academy of Sciences (NAS) review diseases associated with herbicide exposure, the committee's work has been superseded by the NAS review
Re: Neuropathy News Letterjohn h on 5/30/03 at 18:54 (120455)
Brian: My first pair of orthotics were Langer Sportsthotics. They were rigid 3/4 lenght with a thin cover. Cost about $300 about 8 years ago. The Doc had my foot casted before I could introduce myself. His assistant had a syrnige in his white coat pocket and was ready to inject. I stopped the injection but ended up with those orthotics.
Re: Neuropathy News LetterBrianG on 5/30/03 at 20:56 (120466)
Did you like them, could you wear them?
I really like mine. They are also 3/4 length, but I'd consider them semi-rigid, $375 total.
Re: Neuropathy News LetterMarty on 5/31/03 at 21:09 (120573)
While growing up I lived in house that had Asbestos ceilings and lead paint ……. Also as you know I would say at least a ¼ of the posters on the pn sites have had tts and pf surgeries. There has to be some sort of connection with pn and the elements on this board, at least with some. I think there should be a board here for us that have these problems. I know someone suggested it a while back.
Re: Neuropathy News LetterSharon W on 6/02/03 at 09:50 (120702)
I had one neurologist tell me that TTS and other nerve entrapment syndromes were 'linked' with PN, and another one told me that PN 'contributes to' the development of TTS. I don't think it's a casual relationship, or a coincidence -- I think it's a DIRECT relationship...
Re: Neuropathy News LetterSharon W on 6/02/03 at 10:01 (120704)
You had skin exposure to the agent orange, but perhaps not inhaled exposure and probably no exposure from actually eating food contaminated with the stuff. Perhaps your exposure was not sufficient to show up in a blood test, presumably years afterward.
I knew someone who did (unknowingly) eat food contaminated with the stuff and was made very ill. She had a doctor tell her that ingesting it is 20 times worse than getting it on your skin. A whole bunch of abnormal chemicals showed up in her blood afterwards, when she was tested. We were good friends and I sometimes ate at her house...
Re: Neuropathy News LetterBrianG on 6/02/03 at 11:09 (120712)
Just wondering how she could have ingested food laced with AO? Was she getting it from a friend, or farmers market? I know it's not supposed to be used near any food sources. It's a very potent herbicide, defoliates everything!!!
PS: While my boss was spraying it, and walking through it, I was drving his truck, with the 55 gal. drum in the back of it. I wore a cheap .98 cent mask, for all the good it did me.
Re: Neuropathy News LetterMarty on 6/02/03 at 12:41 (120725)
I agree totally
Re: Neuropathy News LetterSharon W on 6/02/03 at 21:28 (120770)
That's a long story, having to do with the town we grew up in, the US Forest Service, the local cattleman's association, Dow Chemical, and some dodos in helicopters who sprayed the stuff on windy days, not just calm ones, and mixed it with water, not oil like they were supposed to...
Besides, my friend was just a child (me too), and her parents didn't speak much English so they had no idea that the stuff was being sprayed over their area, or what it was, etc. But it was VERY nasty stuff. Another friend of mine who lived in that area came from a family that raised angora goats. They had 6 (goat) kids one year born with weird deformities. One of them was born with its internal organs on the OUTSIDE of its body...
Re: Neuropathy News LetterBrianG on 6/03/03 at 07:51 (120779)
Very interesting! I think we mixed it wth water (it could have been oil), but added dish soap to make to stick to the vegetation. I'm sure the protocol is different, when spraying from the air.
One of the guys from my home town got sprayed badly in Nam. When he came home, he got married, but had a whole host of medical problems, not to mention that both of his children had birth defects. After about 5 years, he couldn't take it anymre, and took the gas pipe! I would have to believe there were many thousands more, just like him. Dow has killed more people than anyone knows!!!
Re: Neuropathy News Lettermarie on 6/05/03 at 20:07 (121074)
As some of you know my brother has MS and was also exposed to several large doses of Agent Orange on the ground. Although it has not necessarily caused his MS...no one knows what it is that causes MS, it is believed that his exposure affected his auto-imuune system. I will email him the info you found out.
My brother had a cornea transplant a few weeks ago and it seems to have had some success. He can see a little bit each day.
By the way my hubby's uncle was a farmer. His whole central nervous system just slowly went haywire....it was awful, strokes, a brain tumor. He was a vegetable for years. He used alot of DDT among many things. The docs couldn't help but feel this was the underlying cause. He wasn't tested...I suppose they didn't have great health insurance.