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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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Your's is a great example of how the VA often "does NOT" give Vets the benefit of the doubt.  

In other words, if the doc. said it was "at least as likely as not" that your symptoms were ALS, that should suffice.  

You posted:


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

Ask your PVA rep to show you the regulation that permits Va to deny you because the doc was "only 51 percent certain" the diagnosis was ALS.  Indeed, the regulation call for VA to give the Veteran the benefit of the doubt.  The doctor need only say that its at least as likely as not the diagnosis is ALS.  

Ask the PVA rep to show you court cases, or the VBM, where Vets were denied because the Doc opined his diagnosis was "at least as likely as not" correct.  

VA, however, is anal about nexus with the terms "could be ALS" or "may be ALS" or even "probably is ALS".  It needs to be in words they understand and search for, which is "at least as likely as not".  

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I certainly agree that, since ALS became Presumptive for EVERY Veteran, many veterans would have a hard time with VA and many probably never even know that ALS is presumptive to ALL veterans.

This is some info- we have more here-

"VA Provides Benefits to Veterans with ALS and Families
Military veterans, regardless of the branch of service, the era in which they served, or whether they served during a time of peace or a time of war, are at a greater risk of dying from ALS than if they had not served in the military.  For reasons as yet unknown, veterans are, in fact, twice as likely to be diagnosed with ALS as the general population.
In 2008, the Department of Veterans Affairs (VA) implemented regulations to establish a presumption of service connection for ALS, thanks to the efforts of The ALS Association, key members of Congress, and advocates.  Under the regulations, the VA presumes that ALS was incurred or aggravated by a veteran’s service in the military.  As a result, veterans with ALS and their families and survivors are eligible for “service connected” benefits.
Anyone who served at least 90 days of continuous active duty in the U.S. military may qualify for VA benefits.  Survivors of veterans may be eligible for benefits, including monthly compensation, regardless of when their loved one was lost to the disease.
Qualifying veterans with ALS are entitled to receive VA disability compensation, which is a monetary benefit paid to veterans who are disabled by an injury or disease that was incurred or aggravated during active military service.  Disability compensation is paid monthly and varies with the degree of disability and the number of veteran’s dependents. Veterans with ALS may be eligible for additional special monthly compensation.  There is a minimum 100 percent disability rating for veterans diagnosed with ALS.  These benefits are not subject to federal or state income tax.  Tables listing current compensation levels are available at: http://www.vba.va.gov/bln/21/Rates/."

source: http://web.alsa.org/site/PageServer?pagename=va_provides_benefits

I bet many reps reps and VSOs still do not know ALS is presumptive.

I will go over the info you gave us very carefully----


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  • HadIt.com Elder

We had a PLS vet here - as a possible ALS variant and  a DIC ALS widow and also there is more info here on ALS variants:

This was an old search I did at the BVA, but will try to update it if that will give more info.
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A diagnosis is a "finding of fact" made by a competent physician.  Neither the BVA, nor the CAVC, nor a rating specialist at the VARO is allowed to substitute their own unsubstantiated opinion for the opinion of a competent medical professional.  

Assuming the doctor "made a diagnosis of ALS", then VA is not allowed to "develop to deny".   As Berta explained ALS is a presumptive, and VA should not be allowed to "weasel" out of it, by alleging uncertainty in the physicians diagnosis.  

This is all my opinion based on reading many BVA and CAVC decisions, as well as much research done with my VBM.    

Edited by broncovet
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