I’ve had ET for 32+ years and probably longer just undetected. I am a Vietnam Veteran who was exposed to Agent Orange from 1968 until my tour of duty ended. After my ET was diagnosed I filed a claim in 1990, and the VA handled it very poorly, especially back in the early 90s. After many years, the claim was officially denied, but I tolerated Hydroxyurea and got on with my life.
Fast forward to just 4 years ago and a phone conversation with a woman named Ann from an MPN advocacy group. What an education I received that day. I was enlightened and realized I was being fed bogus information regarding MPNs and veterans for too many years. In 3 short weeks, I was attending a conference at the Marriott in St. Petersburg, Florida, and discussing MPNs and my ET with a specialist from the Moffitt Cancer Center. I now see Dr. Kuykendall annually at Moffitt in Tampa supplementing my VA appointments.
Sincere heartfelt thanks to you MPN Advocacy and Education International for the warp-speed education and reigniting my motivation to reengage with the VA. I did a bunch of research, obtained new Nexus statements from the Oncologists linking Agent Orange (AO) exposure to my MPN, and found numerous medical journal articles regarding MPNs and toxins. I submitted a new claim in 2019 and provided a detailed 3+ decade medical summary with new supporting resource documentation. As expected, my new claim was summarily rejected and kicked to the curb. The VA indicated the reason for denial was that nothing new had been submitted with the claim, go figure!
I naturally appealed the case and finally had a hearing with an appeals board judge in July of this year, 3 years after my initial claim. The judge seemed irritated and appalled the VA claim’s reviewer totally dismissed and ignored all of my supporting documentation, including nexus statements from 2 oncologists supporting the link between AO exposure and my ET.
I just received this past weekend the official VA letter indicating my claim and appeal has been granted. Again, many thanks to MPN Advocacy and Education International for emboldening me to reengage the VA.
It is unfortunate the VA has all the leverage in the MPN cases. As I discovered, even though there are probably hundreds of successful claims for MPNs, every case is handled individually and goes back to square one. So, unlike a conventional court of law, precedent is not taken into account and the entire burden of proof is on the veteran. The level of a veteran’s persistence and determination, individual skills for record keeping, and obtaining all the appropriate documentation over many years, govern the outcome when battling the VA bureaucracy. Thank you for being a large part of helping me navigate the maze.
Sincerely,
Lawrence M.
I too am a Vietnam veteran with exposure to Agent Orange. I have PV which was misdiagnosed by the VA for 5 years and was found when I went to a specialist. I too have had my claim (for PV) denied by the VA. Can you tell me what paperwork you needed to convince them? I would like to reopen my claim with the VA.
I would like to know how you have handled the neuropathy and tingling for so many years especially fingers and toes
I have ET , diagnosed 5 years ago. Am on Hydroxyurea.
Sometimes the numbness and tingling is annoying. Also cold .
I am 88, living with an attitude of gratitude that it’s not worse but would appreciate any suggestions.