ALS

[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

[pwrslm]

On 7/29/2021 at 9:55 AM, broncovet said:

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.    

The VA C&P rep was a NP in my case, and knew less about ALS than I did IMO. He also omitted facts contained in the medical record, and made claims about what that did not exist in the medical record. The treatment I was given for ALS was overlooked, and he stated that I had never had a diagnosis for ALS. I tore his evaluation up and handed it to the VA which totally undermined the C&P. The medication I was given in 2019 was Radicava, and it may only be prescribed for probable or possible ALS, demonstrating my diagnosis in no uncertain terms because Radicava is not used for anything else. I was denied because the NP said I only had suspected ALS, when the term suspected never occurred in my medical record. The SC was denied because the basic criteria did not say "definite" ALS. See my post on that also posted today.

Edited July 31, 2021 by pwrslm

[Berta]

GOOD FOR YOU!!!!!!

That is how I proved the VA killed my husband ( FTCA and 1151 award.) Then I proved a few years later ( but this time I had 3 IMOs and had done extensive lay research on that claim) that he also had an additional undiagnosed and untreated condition- DMII from AO.

I filed for direct SC death and I won.

"What do I do to change the policy? Dozens, if not hundreds of veterans w/ALS are affected." 

When I wrote to former VA Secretary Dr.Shulkin, years ago - I gave a good legal argument with evidence for  2 regulations i 38 USC/CFR that should be changed. A few VA secs had responded to me over the pat 2-3 decades , but I did not really expect any response from this VA Sec.

A few months later Dr Shulkin's office called me to tell me my suggestions had been incorporated into the AMA.

M21-1MR was changed to reflect that.

Another policy might well be changed. I do expect that to happen.

Some time ago I contacted the Presidents Hot Line for veterans - President Trump wanted a lot more Accountability from the VA.

I had done from time to time about twenty years of research regarding a 'policy' that was actually a standing Mandate with the VA Office of General Counsel- VA and the NPDB. My information was given to the Office of Accountability-VA ,that the President had set up.

The Office of Accountability contacted me and asked for some more info----

The result of that was a Bill S 221, in the Senate. It passed the Senate unanimously and went to a HVAC medical sub committee,(still there) and then it will go to the House of Representatives.

The intent of my research and this bill, is to save lives of disabled veteran in the VA Health Care System.

I believe the VA saves live  every day. But their incompetent doctors, and other incompetent medical personnel, have to go------!!!!

Also VA hides their true malpractice statistics from Congress and from the Public. That has to change.

The Bill will hopefully change that as well.

You can also write a Bill yourself- there is instructions on the internet on how to do that- and then you need to sind sponsors in the H VAC r Senate VAC- I have a separate Bill there , with no sponsors yet-it takes a lot of work.

 

 

 

 

 

 

[Berta]

To add:

 347 237 4819  White House Hot Line for Veterans

https://www.va.gov/accountability/   (Office of Accountability)

I have no idea if these entities are still viable, due to the new Administration.

But they are still available on the internet.

This is where I sent my Letter to Secretary Shulkin:

"Secretary David Shulkin                                                                                                                                      February 19, 2017
Veterans Administration
810 Vermont Ave. NW
Washington, DC 20420                       XC #XX XXX XXX

Dear Honorable Secretary  Dr. Shulkin,
    I hope you will consider my suggestion here as one potential way to reduce the tremendous backlog of claims at the Board of Veterans Appeals. I have been a disabled veteran’s advocate for over 20 years, helping veterans and their survivors prepare and support viable claims for VA compensation , DIC, and other benefits they might be fully eligible for."

Gee I had no idea how long ago that was--

I suggest if you write to :
 

Secretary Denis Richard McDonough

(same address as above) that you word the letter , as I did ,' Dear Honorable Secretary McDonough'

and state briefly right away in the first paragraph ,what =your letter is about.

I used a personal statement for the next paragraph that sure got his attention !!!!

you could do that as well.

My letter was about 4 pages long, as I detailed the need for a regulation change-regarding CUE and also I proved with evidence that I had used this tactic successfully myself because nothing in 38 CFR/USC prevented me from doing that, and ,in most cases, my decisions was overturned ( and even one for my daughter, a veteran) in 3 weeks.  That staved off the long arduous appeal process.

(Also a few vets here used my approach with success.)

I wish you well in your quest for this much needed change in how the VA views ALS!!!!!!

We here have altered the lives of MANY veterans , survivors, and their families.

Thanks to Tbird and this wonderful site she created  !!!!!

 

 

Edited July 31, 2021 by Berta
cloud

[pwrslm]

Thanks Berta! You gave me the idea's that will be the direction I take this issue.

T-Bird is a hero, you are right. Much of what I learned about VA Claims came from the internet, and much of it from HADIT. I have been suggesting this site for years to vet's at my local VAMC and other places on the internet. This site should be a locus for RO's also, maybe they would learn something about what they do to Veterans.

(Edit: The WH hotline has been a disappointment to me. Used it successfully the first time out, then it flopped.)

Edited July 31, 2021 by pwrslm