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ALS


pwrslm

Question

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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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:

Quote


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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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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I am glad I looked into this further------

 

That BVA  search above is outdated -there are now 167 decisions at BVA on ALS in 2020 and 2021 so far-and it looks as if the BVA is certainly more up to speed on ALS claims!!!

 

1) https://www.va.gov/vetapp21/files5/a21009033.txt  

PLS variant - ALS granted 

The veteran's  private physician and a VA doctor agreed and the veteran also had submitted medical texts and info from good sources

to support his claim

-------------------------

2. "Service connection for a neurological condition, to include frontotemporal dementia and amyotrophic lateral sclerosis (FTD-ALS complex), is granted."

"Service connection for the cause of the Veteran's death is granted."

https://www.va.gov/vetapp21/files5/21032237.txt

_____________________________________________

 

3."ORDER Restoration of service connection for amyotrophic lateral sclerosis (ALS), with bilateral upper and lower extremity weakness with atrophy, persistent daytime hypersomnolence, bowel impairment, and urinary frequency, is granted. FINDING OF FACT 1. The grant of service connection for ALS in a March 2013 rating decision is not shown to have been clearly and unmistakably erroneous."

"After a review of the record, the Board agrees and finds that while service connection was originally improperly granted on a presumptive basis to a period of service that did not qualify for such presumption, the Veteran did in fact have a qualifying period of service for which presumptive service connection for ALS could be granted. Therefore, the severance of service connection for ALS was improper, and restoration of service connection is warranted."

https://www.va.gov/vetapp21/files4/a21007344.txt

( This case holds a very interesting CUE situation)

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4. " The appellant has established “veteran” status, as service connection is in effect for bilateral hearing loss and tinnitus due to his period of active duty for training (ACDUTRA). 2. The Veteran has a diagnosis of ALS. CONCLUSION OF LAW The criteria for service connection for ALS are met. 38 U.S.C. §§ 101 (24), 1110, 1112, 1113, 1131, 1137, 5107; 38 C.F.R. §§ 3.102, 3.303, 3.318."

https://www.va.gov/vetapp21/files4/21021092.txt

--------------------------------------------------------------------------------------------------

I think these cases are good to review if ANY ALS vet gets denied.

 

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The issue is the diagnosis for ALS is based on research criteria. Originally there was 4 base criteria similar to what they used for MS. These were suspected ALS, Possible ALS, Probable ALS, and Definite ALS. As more of the upper and lower motor neurons become affected, the higher up the diagnostic "ladder" you go. Newer criteria eliminated the suspected category, and replaced that with a clinical possible and clinical probable ALS, so that made it 5 levels of staging. And again, as the newest adjustment came out in the Awaji criteria, the suspected categories were eliminated and that left 3 diagnosis criteria. All of this happened from the early 90s through the around 2016.

The PVA rep explained to me in no uncertain terms that the VA policy is that if you do not have Definite ALS, it will not grant SC for ALS. As the attachment I posted above explains (see "A proposal for a new diagnostic criteria, pg 2) it clearly states that "all three categories describe patients whose disease is in fact ALS, to a very high degree of diagnostic certainty. " When I found this, I sent it to the PVA guy, and he is lost to explain it.  This triggered me (a brain thing I get)! This was why they denied my 1st application last year. How many more veterans are in that position, and are denied benefits for ALS because the VA is basing SC on information that is used to qualify for clinical trials, and not the diagnosis? The criteria of possible, probable, and definite, are not suspicions, but instead align more as a staging level. That opinion was written by 22 of the world most recognized ALS specialist, and the conclusions of that was adopted by the World Federation of Neurology. It is indisputable fact that cannot be overcome to the best of my knowledge.

My goal now is to insure that other vets are accorded the rights to the benefits the VA originally denies, because almost all of the people who are diagnosed with possible and probable ALS will certainly die of ALS (the statistics show that 96% will do so). Many people w/ALS will die and never progress to having definite ALS.

Good news is that my recent 12 July Visit to my Neurology Spec at VA got my claim Approved, and SMC's will be applied. Bad news was that they did so while totally ignoring that evidence I submitted, which was a side step to recognizing what I posted on here. What do I do to change the policy? Dozens, if not hundreds of veterans w/ALS are affected. 

Edited by pwrslm
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