I have been (finally) diagnosed with ALS by the VA. Started getting symptoms in 2015, by 2017 I figured out that the VAMC was not interested in diagnosing those symptoms that were progressing, so I had to go to a non-VA specialist. It took 2 years but in 2019 I was diagnosed w/ALS. VA dragged its feet, and finally in 2021 (after almost 6 years) verified the diagnosis. I have learned a lot about ALS in the meanwhile.
The PVA rep told me that the VA has been refusing to allow SC for Vets if the diagnosis they presented was less than definite ALS. Seems odd because people with possible and probable ALS die and never progress to the definite diagnosis. Started researching this and learned that the possible/probable/definite diagnosis was for research and entry into clinical trials. Found a professional opinion from 22 top specialists in ALS that stated as a matter of fact, all three diagnosis were in fact ALS to a high degree of diagnostic certainty. I submitted that along with several other attachments in a supplementary claim after I was denied last Nov 2020.
My concern is that there may be dozens of Vets with ALS that were denied service connection based on the erroneous criteria. Am attaching a few documents that may help others if they run into this situation. Hope it helps.
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pwrslm
Hello,
I have been (finally) diagnosed with ALS by the VA. Started getting symptoms in 2015, by 2017 I figured out that the VAMC was not interested in diagnosing those symptoms that were progressing, so I had to go to a non-VA specialist. It took 2 years but in 2019 I was diagnosed w/ALS. VA dragged its feet, and finally in 2021 (after almost 6 years) verified the diagnosis. I have learned a lot about ALS in the meanwhile.
The PVA rep told me that the VA has been refusing to allow SC for Vets if the diagnosis they presented was less than definite ALS. Seems odd because people with possible and probable ALS die and never progress to the definite diagnosis. Started researching this and learned that the possible/probable/definite diagnosis was for research and entry into clinical trials. Found a professional opinion from 22 top specialists in ALS that stated as a matter of fact, all three diagnosis were in fact ALS to a high degree of diagnostic certainty. I submitted that along with several other attachments in a supplementary claim after I was denied last Nov 2020.
My concern is that there may be dozens of Vets with ALS that were denied service connection based on the erroneous criteria. Am attaching a few documents that may help others if they run into this situation. Hope it helps.
6 A proposal for new diagnostic criteria for ALS.pdf 7 World Federation of Neurology Vol 35 No 4 Oct Nov 2020.pdf 8-Neurology Live peer exchange APR 2021.pdf
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