Essential tremors and post polio syndrome and agent orange exposure

Posted by bruce0712 @bruce0712, Nov 2, 2020

Very rare condition, I cannot find any experts on this topic. The Veterans Administration admits that I was exposed to agent orange chemicals, thankful I never died from it or got cancer, however, the VA continually denies that my eventual permament essential tremors was NOT caused by the exposure. My attorney believes it was a matter of the Navy should never have allowed my enlistment because I was a polio victim at age 1, the recruiter said "well, you seem fine now". I would have been drafted into the Army and sent to Vietnam had I not joined the Navy, but it turned out I was sent to Vietnam on my ship that was transporting agent orange chemicals. I recovered mostly from polio but have forever had fatigue issues. Attorney believes the combination of having had polio plus exposure likely caused my tremors. I seek an expert's opinion that would agree that this is likely the case. VA denies me any benefits saying there is no proof or any experts saying it is likely. Does anyone know where I might be able to get such an expert opinion? THe Mayo Clinic is telling me they cannot make any appointments for any kind of exam even though I live 90 minutes away from Jacksonville. Any help would be appreciated.

Interested in more discussions like this? Go to the Parkinson's Disease group.

The VA sent me to a C&P when I lived in Las Vegas. I thought the examination went very well, it seemed they were saying they were agreeing with me but I think they misunderstood what happened to me when I was still on the ship, mild shaking but bot as bad as when I hit 40, I thought it was due to my starting to drink coffee….I quit the coffee and some minor shaking stopped…. self diagnosed at age 19. It got very bad starting age 40 when I sought help by a neurologist and I have been on medication to control it ever since, but my handwriting made my payroll management career very difficult to hide my issue…..I hid it until 2017 when I could no longer work and my doctor put me on disability leave and am still on it, I can never do the work I did in my career ever again. I am unemployable in part because of other issues. Anyway, the C&P came back from the VA and I was shocked to read their hard line about there being no relationship between exposure and the tremors. We know for sure the exposure, they don't deny that, but in addition I read that offspring of those exposed have issues with their spines….and yes, my 34 year old has a marble sized tumor in his spine causing pain issues which messed up his life. We applied for benefits for him, also denied "no proof" his tumor was caused by my having being exposed to agent orange, It feels like they have it out for me or else they are afraid my one case could open up a flood gate? I don't know.

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@bruce0712

The VA sent me to a C&P when I lived in Las Vegas. I thought the examination went very well, it seemed they were saying they were agreeing with me but I think they misunderstood what happened to me when I was still on the ship, mild shaking but bot as bad as when I hit 40, I thought it was due to my starting to drink coffee….I quit the coffee and some minor shaking stopped…. self diagnosed at age 19. It got very bad starting age 40 when I sought help by a neurologist and I have been on medication to control it ever since, but my handwriting made my payroll management career very difficult to hide my issue…..I hid it until 2017 when I could no longer work and my doctor put me on disability leave and am still on it, I can never do the work I did in my career ever again. I am unemployable in part because of other issues. Anyway, the C&P came back from the VA and I was shocked to read their hard line about there being no relationship between exposure and the tremors. We know for sure the exposure, they don't deny that, but in addition I read that offspring of those exposed have issues with their spines….and yes, my 34 year old has a marble sized tumor in his spine causing pain issues which messed up his life. We applied for benefits for him, also denied "no proof" his tumor was caused by my having being exposed to agent orange, It feels like they have it out for me or else they are afraid my one case could open up a flood gate? I don't know.

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John,

Sorry to say, tremors is not presumptive for Agent Orange exposure. Although Veterans and their doctors often are "sure" their disabilities are related to herbicides, VA only accepts Agent Orange service connection for the diseases the U.S. Government currently acknowledges as being caused by herbicides, based upon scientific and medical studies that have been done. Tremors is not one of them, Parkinson's is.

The U.S. government concedes that spina bifida (a very specific disease, not generic back problems or tumors) may occur in the children of U.S. Veterans who were exposed to herbicides. No other disease for Veteran's children is recognized. The son's spine problems, unless they are spina bifida, are not service-connectable.

Rich

Bruce0712: Its me johnjames, this is from my friend -who works in claims for many years: Can you go back to this doctor and request a Parkinson's exam, not just for tremors? I was looking back 6 years ago at my first exams by a private doctor-who told me it was only tremors-and he was wrong, it was Parkinson's -which now is in stage 4. So I would procure that exam. Let me know if I can help.

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Thanks very much for looking into that. My VSO was suggesting an opinion as to whether a rare combination of post polio syndrome plus the exposure to agent orange is a different look. In other words, had I not been exposed but still had the polio at age 1, would I likely still have gotten the tremors? Nobody in my family tree has ever had such a situation nor have any of my many cousins nor any of their children. I'll look into being checked for P. Thanks.

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@bruce0712

Thanks very much for looking into that. My VSO was suggesting an opinion as to whether a rare combination of post polio syndrome plus the exposure to agent orange is a different look. In other words, had I not been exposed but still had the polio at age 1, would I likely still have gotten the tremors? Nobody in my family tree has ever had such a situation nor have any of my many cousins nor any of their children. I'll look into being checked for P. Thanks.

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Hello @bruce0712

As it has been a while since you last posted, I was wondering if you have had any changes in your situation with the VA and your health problems. As I recall you were going to see if the post-polio syndrome might have been affected by the Agent Orange exposure.

Has the VA changed their thinking about this? How are you feeling?

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I waas in the Marine Corps and suffer with PostPolia syndrome and the VA refuse to recognize it even with the for deformity and small leg.

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@joyhead1

I waas in the Marine Corps and suffer with PostPolia syndrome and the VA refuse to recognize it even with the for deformity and small leg.

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Hello @joyhead1, and welcome to Mayo Clinic Connect. I appreciate you sharing about your post-polio syndrome.

As this is your first post, I'm wondering if you would like to share more about yourself? For example: how long ago did you have polio; is the small leg your only deformity from that illness; are you experiencing tremors like @bruce0712; any exposure to Agent Orange during your time in the military?

I look forward to getting to know you better.

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Hi @bruce0712 and @joyhead1

I was thinking about you both and wondering how you were doing. You both served in the military and had post-polio syndrome. How are you doing? Has the VA been able to help you?

I look forward to hearing from you. Will you post an update at your convenience?

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@hopeful33250

Hi @bruce0712 and @joyhead1

I was thinking about you both and wondering how you were doing. You both served in the military and had post-polio syndrome. How are you doing? Has the VA been able to help you?

I look forward to hearing from you. Will you post an update at your convenience?

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I am fatigued every day, making it tough to get to the point where I can go out somewhere earlier in the day but eventually by mid or late afternoon I can get my body going well enough to go for walks. May soon be able to return to the gym to do the cycling. Got covid vaccine number 2. That had a few complications initially. Also, my tremors bother me every day, with the maximum medication allowed for my age, this still troubles me and I miss my excellent penmanship skills that I lost by about age 40. I cannot even fill out forms by hand, sometimes I have a friend fill things out for me. The VA acknowledges being exposed to dioxin (agent orange) but they deny any relationship to my problems (which include ED issues since about age 22) with the exposure unless a medical doctor was to express an opinion that this is likely the cause, so far I cannot find any doctor willing to make such a statement, so I continue to suffer and those issues alone make me sad. I just try to hang in there and try to live as normal a life as i can, knowing that there are others out there who have far bigger problems than I have, and my heart goes out to those people. The VA is about to re-evaluate my PTSD from a few incidents that happened while I was in the service, just knowing I have to re-live those incidents again raises my anxiety levels and adds to sleep issues.

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@bruce0712

I am fatigued every day, making it tough to get to the point where I can go out somewhere earlier in the day but eventually by mid or late afternoon I can get my body going well enough to go for walks. May soon be able to return to the gym to do the cycling. Got covid vaccine number 2. That had a few complications initially. Also, my tremors bother me every day, with the maximum medication allowed for my age, this still troubles me and I miss my excellent penmanship skills that I lost by about age 40. I cannot even fill out forms by hand, sometimes I have a friend fill things out for me. The VA acknowledges being exposed to dioxin (agent orange) but they deny any relationship to my problems (which include ED issues since about age 22) with the exposure unless a medical doctor was to express an opinion that this is likely the cause, so far I cannot find any doctor willing to make such a statement, so I continue to suffer and those issues alone make me sad. I just try to hang in there and try to live as normal a life as i can, knowing that there are others out there who have far bigger problems than I have, and my heart goes out to those people. The VA is about to re-evaluate my PTSD from a few incidents that happened while I was in the service, just knowing I have to re-live those incidents again raises my anxiety levels and adds to sleep issues.

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Thanks so much for your update, @bruce0712. I am sorry to hear that you are still struggling with physical and emotional problems associated with your military service.

I hope that the evaluation by the VA for PTSD goes smoother than you expect. I can certainly understand your not wanting to re-live those experiences.

Have you considered journaling about them prior to your evaluation. Sometimes it is easier to talk about them after writing about them. Here is a discussion on Connect about journaling. You might find some suggestions there on how to get started, https://connect.mayoclinic.org/discussion/journaling-the-write-stuff-for-you/

I look forward to hearing how you are progressing getting help from the VA. Will you post again?

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@bruce0712

Yes, the VA thus far has denied claims several times, each time essentially telling me that I would need to prove that agent orange exposure causes essential tremor. They have acknowledged exposure based on where my ship was. I do have a VSO assisting my claims, he is as upset with how the VA is handling my claim as much as I am. Thus, he suggested trying to connect my having had polio with the exposure but that would require an expert opinion. I already know how easy it is for me to get fatigued, and I deal with the tremors and ED issues to boot, to be totally honest.

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I wish they would change that ruling on tremors my husband has had them for 45 years, along with hearing loss and high PSA and the newest finding CT scans that look like cracked glass, and spot on the Kidney, but all VA doctors say not connected to Agent Orange. He should just go outside the VA to a neurologist and see what they say.

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