Problems transitioning between VAMCs

gunnyb

New member
Joined
Nov 13, 2022
Messages
4
Reason
PALS
Diagnosis
08/2011
Country
US
State
TX
City
San Antonio
I was dx with ALS in 2011 while living in Southern California. I was accepted into the ALS clinic at the VAMC Loma Linda and seen quarterly for years.

As life evolved, my wife retired and became my caregiver, we moved to San Antonio, Tx to be closer to family and friends and the VA.

I had been on a drug called Riluzole for 10+ years and one of the many things it did was stop my tremors dead in their tracks.

The VA neurologist that I'm seeing believes that I don't have ALS, but nerve problems in my leg and stopped the Riluzole. The tremors have now returned with a vengeance. They have severely affected my physical therapy. He prescribed some other drug that does nothing.

I have requested a second opinion outside the VA but been denied because it is against VA policy.

Any and all assistance would be helpful in getting this VAMC on track helping Vets with ALS.

TY

Retired Marine Gunny
 

lgelb

Moderator
Forum Supporter
Joined
Nov 5, 2009
Messages
12,747
Reason
Lost a loved one
Diagnosis
00/0000
Country
US
State
WA
City
Seattle
I will leave this to the vets, but thought outside care was allowed these days. Are you in contact with the local PVA or an ombudsman? Thank you for your service.
 

John445

Member
Forum Supporter
Joined
Jul 26, 2022
Messages
16
Reason
DX MND
Diagnosis
06/2022
Country
US
Diagnosed last June through private doctor. As a vet, we are seeing a VA doc, first VA ALS Clinic is the end of this month. We visited the VA two months ago and with help of PVA all documents completed. I have been very open that I want my private doctor to be my primary care physician through this journey, but want the VA benefits. So far no one at VA has balked. We shall see at first the first VA Clinic.
 

gunnyb

New member
Joined
Nov 13, 2022
Messages
4
Reason
PALS
Diagnosis
08/2011
Country
US
State
TX
City
San Antonio
Sit,

If you're going to Audie Murphy VAMC in San Antonio, they have a very bad reputation of denying your dx of ALS, I got this from a local ALS support group. Their Chief of Neurology is the "expert" on ALS and I don't trust him.

I am willing to help you all I can. Keep me posted.
 

Clearwater AL

Extremely helpful member
Forum Supporter
Joined
Aug 28, 2013
Messages
2,619
Reason
PALS
Diagnosis
12/2018
Country
US
State
NC
City
Get Real
GunnyB, if I can add into this... Scroll down the threads of this sub-forum to the thread "Veterans Benefits."
I replied to. Here's just one paragraph of my long post..

"Now, I’ll admit… things may have changed since I had my dealing with them years ago. From going to Washington DC to the Court of Veterans Appeals with a civilian lawyer and winning my claim."

Here’s another paragraph…

"I was able to speak with someone who was in the inner circle of a VA Regional Office where the Administrator of the office said concerning Veterans filing Disability Claims said. Quote…"

“Every T will be crossed, every I will be dotted, every doctors report will be verified including his credentials, the Veterans military records will be scrutinized, the claim will meet every single article of the guide lines of the Veterans Administration before I authorize a dime in compensation to these guys.” ("These guys")

Like it was HIS money! (“…before I authorize a dime.”)

Fortunately the son of bitch (sorry) retired.

The reason I posted this is for all Vets who may read this. (But do read the whole thread cc Veteran Organizations and politicians.) Don’t give up… don’t be reluctant to contact a civilian lawyer. There are now more civilian law firms specializing Veteran Benefits.

I also highly recommend too that you contact the PVA. (Not the DAV)

With a confirmed diagnosis of ALS with the diagnostic code you are entitled to 100% rating. Hope all eventually works out for you.
 

Andvari

New member
Joined
Sep 5, 2022
Messages
7
Reason
PALS
Diagnosis
08/2022
Country
US
State
TX
City
Holland
GunnyB... You aren't by chance Field Artillery are you? I did three years as a combat medic with 155 Howitzers but figured if someone was knocked out I needed to know what to do. I wish the Rilizule would control the fasciculations I am having but no luck with that.

If you were diagnosed in 2011, then I am not sure what the standards were back then for diagnosis, but now they require a VA doc to do an EMG head to toe, and a follow up with an outside doc doing an EMG. The disability should go to when you filed for it and goes back to the initial decision from a VA neurologist. I noticed someone suggested getting PVA involved in the matter if they have denied your diagnosis. PVA is an Amazing Advocate for veterans with ALS. I also know that I get tired of looking up the initials so PVA stands for Paralyzed Veterans of America, and they will help you.

I would suggest getting in touch with your CA VA and do a request for records if an EMG was conducted. Given that your diagnosis is 12 years old, that info doesn't always translate well with time and transfers to other VAMCs. If you had the EMG, you will remember it, it is quite the shocking experience... lol. It should be available from the CA VA. Share that with the doc who challenged your diagnosis but do so through the PVA.

I am still pretty new to this forum, but if you know how to Private Message PM me, I might have some other ways of addressing this matter, but that might include involving congressional people which in the long run would benefit others if Audey Murphy in San Antonio has a reputation for denying claims. If congress don't work, then you can consider the threat of getting the media involved. I am a union steward at the VA in Temple TX, and I know how the VA works. Keep me posted, cause for them to say you were diagnosed with something that is 100% service connected then deny it would be a total chaos situation that I enjoy helping with. Definitely reach out to PVA... if you have no luck get in contact with me and I might be able to help.
 
Last edited by a moderator:

gunnyb

New member
Joined
Nov 13, 2022
Messages
4
Reason
PALS
Diagnosis
08/2011
Country
US
State
TX
City
San Antonio
One of my other Drs happens to be a retired Marine Col and former IG and we have discussed my case. He recommended that I request another Dr. So my last appointment, I go in loaded for bear, and he changes tactics. Well into the appointment, I have a tremor. So as is the case my wife starts working on me to bring me out of it, as she was trained by my Chinese acupuncturist. During the tremor, she told me the Dr was talking to me, asking me questions, etc. When these tremors hit, I never know when, how severe, how many per day, yet during the tremor I see or hear or feel nothing.

So the Dr has ordered a 2 hour EEG with attempts to trigger tremors.

So we’ll see what that brings.
 

John445

Member
Forum Supporter
Joined
Jul 26, 2022
Messages
16
Reason
DX MND
Diagnosis
06/2022
Country
US
Same experience here, private doc diagnosed ALS last July. The VA provided a form for my doctor to complete and has accepted the diagnoses. I am considered 100% disabled, which unlocks a host of benefits. Our visits to Hines VA Hospital have been wonderful. At the last ALS Clinic with the private doc, the social workers suggested to work with VA and of instead of each clinic facility every three months we rotate between each facility every three months. Fortunately I have slow progression but it marches on.
 

gunnyb

New member
Joined
Nov 13, 2022
Messages
4
Reason
PALS
Diagnosis
08/2011
Country
US
State
TX
City
San Antonio
I have the slow version as well. When I was in Southern California VA, the ALS clinic we saw all the specialties in one afternoon.

My VA Dr here is an idiot.

I'm glad you're having good luck with the VA.
 
Top