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.

Have you considered seeing a neurologist specializing in Parkinson that accepts Medicare? It will help your VA claim to have a doc's diagnosis outside VA system. It will help your claim if you are receiving Rx meds for the Parkinson. Get copies of all these medical records to file with your claim. Also, do you have VFW or other service organization rep. fighting for you?

REPLY

@bruce0712 It must be difficult to experience tremors and at the same time pursue legal action against an enormous entity like Veterans Affairs. It sounds like the Navy should not have enlisted you due to your having polio as a child and your attorney believes you have tremors due to having polio coupled with the exposure of Agent Orange in Vietnam.

You are looking for a provider that can make the connection between polio, Agent Orange, and tremors. Did I get that right?

You said that what you are experiencing is rare. I have tagged members @margaretob @hopeful33250
@oldsalt1947 @glenner075 who have previously discussed similar topics.

I have also linked a previous discussion on this topic, as this may be helpful in your search for answers.
– Agent Orange and Neurological Disorders https://connect.mayoclinic.org/discussion/agent-orange-and-neurological-disorders/

I borrowed a mentor’s links from a previous post on this topic. The information may be information that you already have but just in case I have reposted it below.

– Diseases related to Agent Orange https://www.va.gov/disability/eligibility/hazardous-materials-exposure/agent-orange/related-diseases/

– Vietnam Veterans of America: Agent Orange https://vva.org/what-we-do/outreach-programs/agent-orange

– Service-Connected Disability Compensation For Exposure To Agent Orange for Veterans and Their Families https://vva.org/wp-content/uploads/2014/12/AgentOrangeGuide.pdf

Regarding finding a specialist, would you tell me more about what Mayo Clinic said regarding scheduling appointments? Have you been a patient at Mayo Clinic in the past?

REPLY
@erikas

@bruce0712 It must be difficult to experience tremors and at the same time pursue legal action against an enormous entity like Veterans Affairs. It sounds like the Navy should not have enlisted you due to your having polio as a child and your attorney believes you have tremors due to having polio coupled with the exposure of Agent Orange in Vietnam.

You are looking for a provider that can make the connection between polio, Agent Orange, and tremors. Did I get that right?

You said that what you are experiencing is rare. I have tagged members @margaretob @hopeful33250
@oldsalt1947 @glenner075 who have previously discussed similar topics.

I have also linked a previous discussion on this topic, as this may be helpful in your search for answers.
– Agent Orange and Neurological Disorders https://connect.mayoclinic.org/discussion/agent-orange-and-neurological-disorders/

I borrowed a mentor’s links from a previous post on this topic. The information may be information that you already have but just in case I have reposted it below.

– Diseases related to Agent Orange https://www.va.gov/disability/eligibility/hazardous-materials-exposure/agent-orange/related-diseases/

– Vietnam Veterans of America: Agent Orange https://vva.org/what-we-do/outreach-programs/agent-orange

– Service-Connected Disability Compensation For Exposure To Agent Orange for Veterans and Their Families https://vva.org/wp-content/uploads/2014/12/AgentOrangeGuide.pdf

Regarding finding a specialist, would you tell me more about what Mayo Clinic said regarding scheduling appointments? Have you been a patient at Mayo Clinic in the past?

Jump to this post

As far as I know, the tie between Agent Orange and Parkinson’s is presumptive – all you have to prove is that you were Nam during the years Agent Orange was in use. I have never seen polio discussed. The VVA may be a good resource

REPLY

Hello @bruce0712,

I am sorry to hear of your tremors. We have some other members who have experienced neurological problems as a result of exposure to Agent Orange. I would like to invite @johnjames, also a Nam veteran, to share some of his experiences.

REPLY
@erikas

@bruce0712 It must be difficult to experience tremors and at the same time pursue legal action against an enormous entity like Veterans Affairs. It sounds like the Navy should not have enlisted you due to your having polio as a child and your attorney believes you have tremors due to having polio coupled with the exposure of Agent Orange in Vietnam.

You are looking for a provider that can make the connection between polio, Agent Orange, and tremors. Did I get that right?

You said that what you are experiencing is rare. I have tagged members @margaretob @hopeful33250
@oldsalt1947 @glenner075 who have previously discussed similar topics.

I have also linked a previous discussion on this topic, as this may be helpful in your search for answers.
– Agent Orange and Neurological Disorders https://connect.mayoclinic.org/discussion/agent-orange-and-neurological-disorders/

I borrowed a mentor’s links from a previous post on this topic. The information may be information that you already have but just in case I have reposted it below.

– Diseases related to Agent Orange https://www.va.gov/disability/eligibility/hazardous-materials-exposure/agent-orange/related-diseases/

– Vietnam Veterans of America: Agent Orange https://vva.org/what-we-do/outreach-programs/agent-orange

– Service-Connected Disability Compensation For Exposure To Agent Orange for Veterans and Their Families https://vva.org/wp-content/uploads/2014/12/AgentOrangeGuide.pdf

Regarding finding a specialist, would you tell me more about what Mayo Clinic said regarding scheduling appointments? Have you been a patient at Mayo Clinic in the past?

Jump to this post

wow, thank you very much! I made a phone appointment online, that happened on October 23 at 2pm. As I recall, I went through my details on the call, letting the person know what I was seeking as described, and after all of that, the lady put me on hold for about 5 minutes, telling me she was going to see if she could find an appointment in Neurology. She came back on the line to tell me she was unable to make any such appointments, plus there were no waiting lists, nothing anyone at the Mayo Clinic could help me with. I was willing to drive up to Jacksonville for an afternoon appointment whenever they could get me in. But to no avail.
I will pull up the material you pointed me to and send it to my VSO. He had made several claims that were all denied by the VA but we had not considered the post polio syndrome aspect until now, thus I was willing to be examined for that.

REPLY
@ggopher

As far as I know, the tie between Agent Orange and Parkinson’s is presumptive – all you have to prove is that you were Nam during the years Agent Orange was in use. I have never seen polio discussed. The VVA may be a good resource

Jump to this post

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.

REPLY
@oldsalt1947

Have you considered seeing a neurologist specializing in Parkinson that accepts Medicare? It will help your VA claim to have a doc's diagnosis outside VA system. It will help your claim if you are receiving Rx meds for the Parkinson. Get copies of all these medical records to file with your claim. Also, do you have VFW or other service organization rep. fighting for you?

Jump to this post

I should try that. I only recently moved to Daytona Beach so I don't have a Neurologist like I had in California. I cannot reach the one I had in California as he had retired a few years ago. I may try t get an opinion from him. I do have a VSO who has been fighting for me, my claims are denied for the tremors being caused by agent orange, but we had not yet considered trying to link the combination of having has polio with the exposure.

REPLY
@hopeful33250

Hello @bruce0712,

I am sorry to hear of your tremors. We have some other members who have experienced neurological problems as a result of exposure to Agent Orange. I would like to invite @johnjames, also a Nam veteran, to share some of his experiences.

Jump to this post

My name is John James- Hopeful ask if I would try and help you with information about (Parkinson's and the connection with Agent Orange?-and there is) I was diagnosed by the VA Neurological over 4 years ago. And he told me that agent orange was related to the disease of Parkinson's and he would send in my positive exam for Parkinson's and the connection to agent orange- and my exposure both times I was in Viet Nam -66 and 67. However-here in Phoenix, the VA has a full time officer that versified ( for example) my exposure to the chemicals-which I needed for my claim. All you need is your DD214 showing when you were in Viet Nam and the unit-which they can trace to verify you were in VN and exposed, and where you were at. They give you a letter verifying-you were in fact exposed and than they put that letter with the Parkinson's diagnosis for the claim. They approved my claim in 30 days. Was there something else you are trying to find info: for a claim John James

REPLY

In my case, the VA is saying that there is no medical conclusion by any experts that agent orange could have caused my tremors. Until I provide any medical expert that expresses the professional opinion that this is likely the cause, my claim is denied. Even when they acknowledge I was indeed exposed. That they admit based on the ship's know location which I was told to prove, so I did. Once I proved that was true, they changed the narrative to "prove that agent orange caused tremors". Seems they admit it for Parkinson's but not for tremors. Makes no sense. Thus, is why I put in the other factor of polio history and the hope of finding some medical expert in a position to declare that my tremors were likely caused by the combination of agent orange exposure plus post polio syndrome symptoms. So frustrating.

REPLY

I'm sorry to hear your getting such a run around- Give me a couple days and I will talk with the VA Claim's Officer here in Phoenix- about what their telling you- that it can't cause tremors. Was a VA Nero/Doctor who did the exam? I will check this out and get back to you by Friday. Johnjames

REPLY

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.

REPLY
@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.

Jump to this post

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.

REPLY

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.

REPLY
@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.

Jump to this post

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?

REPLY

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.

REPLY
Please login or register to post a reply.