Chemical exposures and MG

[John Stormer]

I am a Vietnam veteran and was diagnosed with MG in 2007.  I know of two other Vietnam Veterans with MG.

 

[paul spychalski]

I am a Vietnam Veteran ’67. I have all the symptoms of MG but no diagnosis of it. I’ve fallen many times, 2 broken ribs, stitches in my head. Finally my son bought me a cane which helps a lot but I’ve fallen anyway. Double vision is bad especially when I’m tired, so are the weak legs. No help from my civilian Doctors but the VA Doctors are still looking into it.

[paul spychalski]

I finally found a MG Neurologest, and he’s giving me Pyridostigmine 60mg 3x’s a day. I feel more confident walking, I still have my cane at hand but my leg muscles are stronger. The VA Nero said the VA gave me a Generic, I think is was past it’s prime. This med. is working.

NERVER GIVE UP!

 

[David S]

Good day all –

Thank you for this post.

I am a VietNam vet and filed for additional disability for MG based on Agent Orange exposure.  I currently have 20% disability for hearing loss.

My claim was denied.

I did quite a bit of research into veteran’s claims and  found a number of settled suits that included the claim that Agent Orange caused their MG but were denied because objective evidence as to causality was not linked to MG, so the claims were denied.

During my review of this potential problem, I was unable to find out how many VietNam vets made this claim and how many were denied.  The records are not available for review.

Regarding those that think a chemical exposure caused their MG,  has any chemical company acknowledged that their chemical caused this disease?  Has any government body acknowledged that chemical exposure caused MG?  If so, what chemical company and which govt. body?

I would be most interested in any data that shows that MG can be caused by Agent Orange.

Again, thank you for your post.

Scott

 

 

[paul spychalski]

For your hearing loss, go see a VSO.

[paul spychalski]

I finally found a MG Neurologest, and he’s giving me Pyridostigmine 60mg 3x’s a day. I feel more confident walking, I still have my cane at hand but my leg muscles are stronger. The VA Nero said the VA gave me a Generic, I think is was past it’s prime. This med. is working.

NERVER GIVE UP!

PS: look up the PACT ACT…

[paul spychalski]

I found this online maybe at an American Leigion site:

Citation Nr: 1147153        
Decision Date: 12/28/11    Archive Date: 01/09/12

DOCKET NO.  05-33 541     )     DATE
  )
  )

On appeal from the
Department of Veterans Affairs Regional Office in Waco, Texas


THE ISSUE

Entitlement to service connection for myasthenia gravis.  


REPRESENTATION

Veteran represented by:     Texas Veterans Commission


WITNESSES AT HEARING ON APPEAL

The Veteran and his spouse


ATTORNEY FOR THE BOARD

S. Dale, Associate Counsel


INTRODUCTION

The Veteran served on active duty from June 1966 to May 1968.  

“In sum, the Board concludes that the evidence of record regarding whether the Veteran continuously suffered from myasthenia gravis since his separation from service is at least in equipoise. Accordingly, the Board will resolve the benefit of the doubt in favor of the Veteran in this case as the law requires and grant service connection for myasthenia gravis. 38 U.S.C.A. §§ 1110, 1131, 5107 (West 2002 & Supp. 2011); 38 C.F.R. §§ 3.102, 3.303, 3.304 (2011).

ORDER

Entitlement to service connection for myasthenia gravis is granted.  

[David S]

BTW – I also contacted a couple of Law Firms that specialize in VA medical claims and was advised that there is no precedent stating that Agent Orange caused or can cause MG.

Scott

[paul spychalski]

The VA is helping with my MG, but only helping not admitting anything, thats better than nothing, I go see my Neurologist in March 2022.

[Shane Tarr]

Folk

I noticed some of you are asking whether there is a causal link between Agent Orange and MG? I work on-and-off in Vietnam and have spent some time in places like A Luoi in Thua Thien Hue – A Luoi is a border district with the Lao PDR  – and Agent Orange was used very widely in this district. I assume if there is a causal link Vietnamese affected by Agent Orange (some of them are still alive) must have some idea as to whether there is or not. Although I am not sure much is known about MG in Vietnam.

I myself was diagnosed with MG in August 2018 but the Thai specialists said my MG might have been caused by being envenomated (bitten) by a beautiful but quite toxic Banded Krait – its venom is reputed to be 10 times more lethal than a cobra while working in the forests along the Mekong River in Cambodia close to the border with the Lao PDR. The pathologists in New Zealand where I was born claimed the Thai claim was nonsense but they were proved quite wrong because several of the world’s leading experts including one from India said it was possible,

I bring this up to illustrate that medical experts are not always correct with their assessments and this might apply to those affected by Agent Orange. Please direct message me and I will do some checking around for you in Vietnam when lockdowns are more relaxed.

 

Cheers

Shane

 

 

[David]

When I was younger was exposed to Chlordane (which was removed from the market because of its danger).  My exposure was enough to cause hospitalization for a week.  Later on in life was diagnosed with MG.  Wonder if there is a correlation?

[ANITA A. TARLTON]

As a child, I also was exposed to chlordane.   I was diagnosed with MG at age 65. However, I can look back and see many red flags that could be MG.

I think there might be a connection, at least to autoimmune issues in general.

[Rick B]

I too was exposed to chlordane, a pesticide, many years ago. I had no symptoms at that time  but now wonder if it is related to my recent diagnosis of mg.

[Sandra Davis]

Yes, my exposure was to drugs injected into my body. Don’t forget that these are Chemicals, too.

My double vision and spasms in my 4th and 6th cranial nerves started the day after I had a complicated root canal. I was given extra doses of lidocaine during the dental procedure, because it took longer than expected. After 10 days of double vision, I saw an opthomologist who suggested I see a neurologist. The only way I could see one was through the Emergency Room. They admitted me for what they thought was a stroke, and that night gave me both types of dye, meglumine and radioactive Iodine for two different scans. Fortunately it wasn’te a stroke, but then had full blown generalized MG, caused by dyes. I could open only 1 eye, had difficulty talking, eating swallowing,  and walking due to loss of balance. These were not corrected with 100 mg of mestinon 3x/day plus 240 mg Imurane/day, plus IVIG for 5 days a week, every 4th week for 4 months.

I then had a thymectomy. Following that I was intubated about for about 18  hours, and given 5 plasma exchanges. After that I had my swallow study, and was permitted solid foods. Some of the symptoms cleared up. I could talk and move somewhat more easily. The double vision never cleared on those drugs. I finally stopped Imurane after I found my platelets were down to 37! That took 15-16 months to develop. I have not had that drug and for over 2 years, and I am still troubled by it . Twice I’ve had GI bleeds, and also last year I had surgery for cancer. The neurologists was been willing to check my liver enzymes to see if they indicate damage. In fact, they did not even check my CBC’s again after I had been on the drug for 6 months. Fortunately my PCP did. I had begun to have physical signs of thromocytopenea 9 months before it was confirmed by a lab! Each time I saw my neuro. Dr.’s I complained about the Purpura (these were huge purple and black spots on my arms and legs), and they never addressed it. That is one of the early warning signs that your liver and/or bone marrow are being damaged.

The MG Foundation gave me a list of drugs to avoid, of course Lidocaine and Megalumin as well as the Iodine (iothalamate) are on the list of drugs that exacerbate MG. Keep us posted on the VA and Agent Orange. I am also a Vietnam era vet. While I didn’t go there, almost all of my patients had been evacuated from there within 48 hours of their injuries.

 

 

[Cynthia]

I work in a factory for seven years and was exposed to toluene. A government agency come in an did an air quality test. Funny those test were buried and we never saw the results

[Sheila Troiano]

I also was exposed to chlordane as a child, my parents used it to keep the bugs and ants out of the house. Also, I was exposed to asbestos, our pipes in the basement, when I was a kid, were wrapped in asbestos insulation. In the winter, my sister’s and I played in the basement. When the balls bounced and hit the ceiling, asbestos dust fell into our hair and we shook it out. I was exposed to a flea preparation as an adult, a few years before being diagnosed with MG. After giving cats a flea bath, the next day I was disoriented, felt like the world was tipping and I couldn’t walk. That was the first time I experienced double vision. I went to the hospital and as usual, they don’t look for the zebras in a pack of horses. A few years after, I was using a weed preparation. The same thing happened. In hindsight, I connected the two, looked at the ingredients and found both contained similar organophosphates. I’m 99% sure that all this had something to do with it. So, the answer is ” yes” I do believe chemical exposure can precipitate MG.

[David S]

Looks like just about everyone has been exposed to this stuff.  🙂

Nasty, nasty stuff.

https://wwwn.cdc.gov/TSP/PHS/PHS.aspx?phsid=353&toxid=62

I was in Phu bai and Danang.  Agent Orange was heavily used in those areas.  I remember a truck spraying that stuff around our Perimeter and knew the guys spraying it.

Scott

[Robert Richardson]

Desert Shield/Storm veteran, and I recall “P tabs” distributed twice prior to deployment… is this incidental or coincidental that the same tabs are necessary now for my MG…?

[Robert Richardson]

…and my VA disability claim is denied.

[Maria]

I lived not far from a tannery for 18+ years.  The building was later demolished but nothing could be built on the land because of the contamination.  There was also a gasoline refinery that produced a huge orange glow nightly.  I was told it was very possible that it caused my myasthenia.

[ANITA A. TARLTON]

Maria…. wow.  Just wow.

[Norman Ross]

In 1984 I accidently treated myself with chlordane by brief gusty winds that caused the chemical to contact my skin.  I soon realized that the chemical was damaging my nervous system, and took an extensive cool shower to alleviate the pain, but to no avail.  A trip to the emergency room was necessary.  The treatment was cool compresses over the affected area and codeine to relieve the pain.  After two days of treatment with the codeine, I seemed to be OK.  Years passed.  In 2016 I was diagnosed with Bell’s Palsy.  That was treated with prednisone, and lasted about two weeks.  In late 2017, I was diagnosed with Myasthenia Gravis (gMG).  Could the chlordane be the cause of an imbalance in my antibodies to manifest such maladies as the Bell’s Palsy and Myasthenia Gravis?  Highly suspect!!

On the theme of “research” regarding MG, I want to note two more issues.

1.)  Today, I read an article on Yahoo regarding the retraining of our immune system to not destroy certain cells that are beneficial to us.  Is this a key to a novel way to cure MG? A link to this news article is here:  https://www.yahoo.com/news/reverse-vaccination-technique-mice-suggests-133457275.html

2.)  I have searched for, but not found a meaningful database that can be searched for clues for the causes and possible prevention, causes, treatments, and possible cures for MG.  I have seen many “pockets” of information regarding MG, mostly “feel good” stuff, but no comprehensive investigation and publication that will lead to a definite cure for MG.  If anyone at Myasthenia Gravis News is aware of a serious collaboration regarding MG research, I would like to know.

Thank you,

 

 

 

[Martin Kristo]

I was an infantry grunt in the field for 11 months (1969-70) before being wounded in  70. The Agent Orange News letter article written by Michelle Taylor army nurse (1968-69) didn’t  give the specific autoimmune disease  from which she suffers. MG ??.  Having been diagnosed with MG in May of 2020 I like so many of us  wonder what could have brought on this disease.  In addition to the MG  I’ve had metastatic melonoma of my lymphatic system.

Mestinon & Imuran have been my go to drugs and seem to be keeping things (crisis) in check.

 

 

[Barbara E.]

Thank you, Norman. That was an extremely interesting article.

There may not be a single database with absolutely everything, but there are many that can be very useful. I’ve looked at several, depending on what I’m interested in locating. For example, the U.S. National Library of Medicine has https://clinicaltrials.gov where you can search by topic or medical condition, along with options like location and many other criteria (recruiting, completed, etc.).

Other resources include PubMed Central, NIH and many, many more. If you search online for database medical studies or trials, you’ll see lots of option that are either open for use to all or requires a free registration.

Good hunting!

[Kirstin Born]

I am the daughter of a veteran who had multiple Agent Orange exposures prior to my conception.  He passed due to his AO-related illnesses a few years prior to my MG diagnosis.

There is mounting evidence showing that AO causes a number of medical conditions in the offspring of those exposed.  And based upon information shared on several AO FB groups, many of us have auto-immune disorders.

The Toxic Exposures Act of 2015 directed the VA to collect data about health conditions of the offspring of servicemembers exposed to AO in order to find commonalities and eventually provide support.   To add to the list if you are the child or grandchild of a servicemember exposed to Agent Orange, please contact the VA.

In the meantime, I would love to see the MGFA conduct research into a connection between MG and chemical exposure from farms, industrial use, and Agent Orange.

[Robert Powers]

I am not certain about some go the “chemical” exposures stated here can relate to causing MG.  Possible sure…but I believe that anything is possible.  Usually, exposure and effected of some of the chemicals mentioned would have a closer time correlation.

HOWEVER, I do believe that severe, long term, emotional and physical stresses can trigger MG and other autoimmune diseases like MG!  I have discussed these possibilities with psychologists, Psychiatrists, and Neurologists and there is some agreement that these factors must be considered!  There is much variation in MG, symptoms, severity, etc.

Some of the chemicals mentioned in this forum can be associated with activities that also have chronic pain and psychological stresses!   I have some pre-med background and experiences with people, etc…and it makes much sense…but agencies and many doctors will not even discuss it!

[Deleted User]

i was spraying Round Up (glyphosate) and wind sprayed some back on my face. an hour later my eye was swollen almost shut. 2 weeks later swelling was gone and my eyelid was drooping. my ophthalmologist believed it was ocular MG, as did I. 6 months later and before i could get to neurologist appt, Shingrex vax triggered generalised MG and diagnosed in hospital, 10 days after vax, i was in ICU with a crisis.

glyphosate is made by same company developing agent orange and agent orange was probably a predecessor of glyphosate. i think 1 hour is a close enough reaction to chemical exposure.

[Lou Venema]

I was in VietNam 67-68. I was in the Central Highlands from the coast to Cambodia. The majority of my time was spent with the forward battalion headquarters. We travelled a lot via ground or air. We did a lot and saw a lot. I saw a lot of white stuff being sprayed by fixed wing aircraft  and helicopter. I don’t know if I was exposed or not. I went to the VA for my agent orange medical examination and was found to be clear of anything at that time. I have been treated by VA since 2008 for a number of conditions and have multiple blond tests each year.

Vets should go to https://www.publichealth.va.gov/exposures/agentorange/locations/vietnam.asp for more information. There are also many sites with maps that show where and when agent orange was used. The VA test is the first place to start if you are seeking compensation. There are a number of conditions that have been attributed to agent orange. If you have one of those illnesses and were in VietNam or other associated area you will automatically be considered as service related. If you have not been diagnosed with the assumed diseases you will not service related. It is that simple.

If you suspect that you have MG have your doctor order a blood test for AChR antibodies. 80 to 85 percent of MG patients test positive for AChR antibodies. I was diagnosed with MG in 2013. Once I learned what the symptoms were, I realized I had been having issues with MG probably at least for 10 years prior.

I hope this helps some people trying to get compensation from the VA.

Louu

[Stephen D. Turner]

I was assigned to the DMZ between North and South Korea in 1970-1971. I was with the Second Infantry Division. Had it not been for an article in the Second Infantry (Indianhead) Division Association Newsletter, I would not have known that Agent Orange was used a a defoliant in the DMZ in this time period.  I was diagnosed with Generalized MG about 4 years ago.  I have not (yet) filed for a VA disability. Thanks to all of you who have posted information about Agent Orange/chemical exposures in military service and/or your experiences related to disability claims filed with the VA related to those exposures.

[Kirstin Born]

My dad was stationed along the DMZ from 67-68 at Camp Kaiser, which was prior to my conception. He only learned of the AO exposure after he had become ill (not MG). He has since passed. He did apply for VA AO benefits before he passed. There is a bill that will be introduced to the House this session which expands coverage to the biological children of male servicemembers with certain conditions. I filed a claim a few years ago, piggybacking on Dad’s claim. It was denied because currently the VA only recognizes Spina Bifida in the offspring of male servicemembers. The bill, if passed, may likely change it. If you do file a claim, hopefully it will go smoothly for you.

[Bill Wheeler]

I was treated with Zithromax, generically known as azithromycin, several long-term courses to cure Lyme Disease as other antibiotics did not work. It was just after the final 3-month treatment I was diagnosed with Generalized MG. Current literature shows some people with West Nile Virus treated with Zithromax also developed MG. Interesting that FDA and the maker of this antibiotic have never mentioned this as a possible side effect or did further investigation into any correlation. Have any others had a similar experience? Thanks!

[Deleted User]

They have also thought lyme disease is a trigger/cause for MG. I had lyme disease but MG didn’t present for another 9 years and triggered by Round Up exposure.

[Martin Kristo]

I was an infantry grunt , always in the field for 11 months before being medevac’d out. We routinely humped through the oily jungle knowing and watching on occasion the mist of “defoliant” being  dispersed like crop dusters from the sky.

I was diagnosed with melanoma in 2004 on my right scapula area then metastasized to the nodes in my right axilla in 2008. After multiple surgeries and interferon alpha treatments things seem to be in check. Neuropathy worsened.

My MG was diagnosed in May of 2020. I am currently taking Pyridostigmine and Azathioprine through the V.A..

It seems like with so few cases of MG actually being brought to the attention of the V.A. they get passed over. With that said I hope the silent cases of Viet Nam Vets with MG come forward to let them know we would appreciate being heard.

M. Kristo

 

 

 

 

 

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[David S]

Hi Martin –

Have you filed for VA disability compensation for gMG service connection?

“38 CFR 3.309 (up to date as of 11/22/2022)
Disease subject to presumptive service connection”

https://www.govinfo.gov/content/pkg/CFR-2011-title38-vol1/pdf/CFR-2011-title38-vol1-sec3-309.pdf

MG is now accepted as a presumptive service connected disease for Vietnam Vets since Nov of 2022.

I recently had my VA C&P Exam for gMG service connection.  The exam was not to determine if my gMG came from my Vietnam service but was to determine the extent of my disability.  I requested 100% disability.  I should get the results someday…..  I had requested that the process be expedited due to me having a Chronic Disease.

BTW – I was in Phu Bai and Danang where trucks were spraying AO around the perimeter of our base.  My hooch was next to the perimeter complete with barbed wire and a bunch of hanging cans.

Scott

[Martin Teitel]

Hi – I want to share a deep idea about chemical case. I too was in Viet Nam and I’m sure exposed to lots of things. But in the 90s my wife was driving from our home through an orchard. The farm guy spun his spraying tractor just as she drove by with the car window open. She was drenched with what we later were told was an organophosphate. She came back home dripping and I helped her into the shower and tried to scrub her down.

She was diagnosed with ALS in 05 and died in 2010. A year later after lots of wrong diagnoses – including damaging surgery – I spent 11 days in intensive care and when I was told I had two days to live, they finally let the neurologist in. He handed me mestinon, and I was off the breathing machine in an hour. That was my start with MG treatment. But here’s my point:

Organophosphate is a key element in chemical warfare. If you read about it especially during the mid East wars starting in the early 90s, it sounds a lot like hyper-MG. And that’s when the US Military started giving mestinon to soldiers in Iraq. And since then the military has sponsored lots of research on MG and ALS type illnesses. I recommend you look at that complicated young people’s thing called the internet -for quite a bit of info from our Department of Defense.

And (finally), my conclusion is that certain chemicals like organophosphate can and do cause neuro muscular destruction. Maybe not to all of us, but I’m pretty sure me and my wonderful late wife….