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    • #17487
      Amy Cessina
      Participant

      Several of us had noted we got MG after a chemical exposure. Varying lengths of time between the exposure and symptoms. I had commented in another thread because another member mentioned he was a Vietnam vet and I had heard agent orange could be a trigger for MG. I Was wondering if anyone else had experienced a chemical exposure and went on to develop MG.

    • #17510
      John Stormer
      Participant

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

       

    • #17511
      David Seibert
      Participant

      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

       

       

    • #17512
      David Seibert
      Participant

      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

    • #17523
      Shane Tarr
      Participant

      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

       

       

    • #17525
      David
      Participant

      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?

      • #17534
        ANITA A. TARLTON
        Participant

        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.

    • #17528
      Rick B
      Participant

      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.

    • #17530
      Sandra Davis
      Participant

      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.

       

       

    • #17538
      Cynthia
      Participant

      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

    • #17539
      Sheila Troiano
      Participant

      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.

    • #17537
      David Seibert
      Participant

      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

    • #17547
      Robert Richardson
      Participant

      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…?

    • #17548
      Robert Richardson
      Participant

      …and my VA disability claim is denied.

    • #17560
      Maria
      Participant

      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.

    • #17566
      ANITA A. TARLTON
      Participant

      Maria…. wow.  Just wow.

    • #17733
      Norman Ross
      Participant

      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,

       

       

       

    • #17740
      Martin Kristo
      Participant

      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.

       

       

    • #17744
      Kirstin Born
      Participant

      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.

    • #17747
      Robert Powers
      Participant

      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!

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