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StillSteve

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I've not posted in about two months because little has changed in my case. No news is good news, and I'm thankful for that. But I'm trying to prepare for what I can, and have some questions related to VA benefits for ex-US servicemen.

First, some background info that is relevant to my questions:

***
My neurologist (an ALS specialist)--based on the results of three EMGs, an MRI, blood and urine tests and re-tests--"suspects and expects ALS." But I have no diagnosis, because at this point the EMGs have shown clear evidence only in my left arm. There have been two "minor" findings in the first dorsal interosseus muscle of my right hand (the first symptoms I noticed around a year-and-a-half ago were in this same spot on my left hand). The only UMN signs he detects are brisk reflexes in my left wrist. I have normal reflexes in my left ankle and knee, and the doctor suspects that these indicate that I am "developing brisk reflexes" in these locations since I have NO deep tendon reflexes on my right limbs, and was diagnosed in 2007 with Adie's Syndrome. At that time, my examining neuro-opthamologist wrote that he was "unable to elicit deep-tendon reflexes in any of the seven locations tested" (this is a feature of Adie's). My current neuro has written that he's observed "no bulbar involvement" and that Babinski's and Hoffman's signs are absent.

My doctor and the staff at the ALS clinic have told me that my progression is slow. The little change that has occurred is in my left arm and hand. I show significant atrophy in both, and this is becoming more pronounced and I'm getting weaker. To some degree or another, I'm having all of the expected problems with my left hand: can't turn a key, very little grip strength, hard to manipulate buttons, typing with difficulty, etc.

Fasciculations, which I didn't notice until the end of February this year (about eight months ago) seem to be getting worse. I get them virtually everywhere from neck down (I get some facial tics that I think are probably unrelated). They seem to be getting stronger, too. Strong enough to move my fingers, can be seen "jumping" even through shirt sometimes on chest and shoulders. Fasics were detected in arms and legs during last EMG and, doctor has seen them. He mentioned that he wouldn't expect these in monomelic amyotrophy (MMA), which he mentioned earlier as a possible diff/diagnosed.

I'm 50 years old, still working, and in otherwise good health. I served four years in the U.S. Navy (1980-84) and was honorably discharged. I did not serve in combat (and I can't imagine that my ALS really has anything to do with my service). I've never received any VA health benefits or visited a VA hospital (never knew I might be eligible).
***

I have lots of questions about the process of applying for VA benefits. I know that ultimately some VA office or "hotline" will be the place to go for information. But maybe there are some PALS or CALS here who can point me in the right directions. Here are my questions today:

- Given my current condition (undiagnosed, but well-qualified doctor seems pretty confident that ALS will ultimately be the answer), is there any reason to contact the VA now?

- I've already had a second opinion, though it wasn't a completely independent one (my first neuro referred me to the U of Minnesota ALS clinic, and passed along results of first two EMGs along with her opinion). Is it possible/advisable to go to a VA hospital for a third (second?) opinion at this juncture?

- I may have a chance during an open enrollment period next month to buy long-term disability insurance. (It's not clear to me yet whether ALS would be excluded for just one year, or forever based on the fact that I have seen a doctor in the past year for this yet undiagnosed condition.) If buying LTD insurance this is an (expensive) option, is it unnecessary given my status as a U.S. military veteran? In other words, what sort of benefits does the VA provide to PALS?

I understand that the best answer to all three questions might be "Call the VA and ask them," but I appreciate any pointers that anyone here can provide.

Thanks,
B
 

Beach Bum

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Get the VA as soon as possible,you want PVA this is what I was told at a support group meeting,I Had my dd214 and got the form,call them.Also I was at the clinic Duke Univ last week the social worker called and talked with the director at the VA and mailed all the info to him.Two guys at the support have told me about what I can get,dont waste anytime!

ken
 

Bill0808

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Joined
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Messages
10
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Loved one DX
Diagnosis
08/2010
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US
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TX
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Our experience was:

contact them asap!

VA national 1-800-827-1000,

PVA National Headquarters: Contact Us | Paralyzed Veterans of America
800-424-8200

ALSA: Welcome - The ALS Association
Get intouch with your Local Chapter ASAP they have lots of good info for you

We were incredibly lucky with this, we went to the local ALS Support Group and we were given wonderful information, and the name of our PVA Senior National Service Officer, he took care of everything very quickly.

They will send you a packet full of paperwork to fill out, you will need your DD214 and they asked us for Dad's written Diagnosis, when we got the diagnosis it was written as "Bubar ALS possible" or a "probable" diagnosis this was enough for the PVA Rep to send us the paperwork and get started...

All Our Best Wishes, hope this can be of some assistance
 

maryhahnward

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Joined
Jun 17, 2009
Messages
442
Reason
CALS
Diagnosis
06/2010
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US
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NC
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Wilmington
Duke ALS Center works very well with the PVA. They will expedite your claim. My understanding is that you do need a diagnosis. The Duke ALS Center director is also the director of neurology at the VA. Do some google searches and you will find out the genesis of why veteran's with ALS qualify for presumptive benefits.
 

maryhahnward

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Ken is giving you good advice. I hope you get your benefits sooner rather than later.
 

sadiemae

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In my opinion, you are better off getting a DX of ALS from an outside Doctor first, then going to the VA. The VA doesn't like to give a DX of ALS because it costs them so much. There is a thread on here somewhere that deals with this very subject, and when I find it, I will PM you with it. Once you have the DX, do get a PVA officer to help you. You may want to locate one now and ask his(or her) opinion. It does not matter if you served in combat, just that you have 90 continuous days of active duty, other than training. I believe that the vaccines you all got during basic training could have something to do with it.
 

JennB329

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Ken -
Beach Bum is 100% right. Get the VA involved as soon as possible. They will tell you what papers you need to dig out of your archive and will put you through a battery of tests by their own doctors. The sooner you can get all of that taken care of the better. Also, and possibly most importantly, get in touch with a Wounded Veterans or VA Patient Advocate. They know ALL of the ins and outs of the system and will be the most likely to give you realistic time lines and requirements that you need to meet.

We got the VA involved quickly and have been through 2 patient advocates (finally got a good one through Wounded War Veterans) for my dad. It's ALOT or red tape so be ready to jump through hoops... lots of them. Some things (i.e. grants) take longer and more paper work to get going but get them involved immediately to help with any/all medications and any assistance devices you may need.

Where the VA is concerned, I can't stress 2 things enough: 1) TALK WITH THEM NOW! and 2) BE PERSISTENT (the require lots of follow up on your part - otherwise, you will slip through the cracks).

As much as I wish I didn't have the advice to give, and that there wasn't a need for you to seek it, I'm giving you the best advice I've got for this terrible situation. Good luck to you!

Jennifer
 

sadiemae

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Jennifer, did your Dad already have his DX? Going to the VA without a DX can be a huge mistake in some(most) cases.
 

ZenArcher

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Without an ALS diagnosis contacting the VA would be a waste of time. As soon as you get a definitive diagnosis the first call should be to your local Paralyzed Veterans Association. Once covered by the VA your benefits will increase as the disease progresses. This includes life insurance and payments to your spouse after you pass. The full list is too long to get into here. If your doctors believe it is ALS they need to make the diagnosis then you can get the ball rolling.
 

StillSteve

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02/2011
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Twin Cities
Thank you all for the thoughtful responses (public and private). Just after I posted, of course, I did find another thread here that covers this topic well (it's the one linked at the bottom of this thread, started by linray and titled "Va benefits"). I was also directed to page 11 of the thread

https://www.alsforums.com/forum/general-discussion-about-pls/6262-military-veterans-11.html

It seems that the consensus is that I should:

- Contact the VA right away, and specifically the PVA (Paralyzed Veterans of America) representative, to get a head start on the paperwork, but

- Not rely on a VA physician for my diagnosis, but stick with my current neurologist for that (I have insurance coverage).

My next appointment with my neuro is scheduled for December 11. I'm seeing him at his private practice rather than at the ALS clinic, since my progression is slow and I don't really have a need at this time for the full range of services that the ALS clinic provides. But I am registered with the clinic, and am able to communicate with the coordinator. I'll get in touch with her to see what her advice is about who to contact locally at the VA. She knows something of where I'm at on the diagnosis timeline, and will tell me if she thinks it is too early to contact them. But I will be keeping in mind the info I've gained here.

I'm still hoping I never do get the diagnosis, of course. But, I just want to stay ahead of things just in case.

Thanks again,
B
 

StillSteve

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Messages
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02/2011
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I posted the above message before seeing ZenArcher's latest reply. So maybe there really isn't a consensus that I should contact the VA right away.

Given that I have a very minor disability and no diagnosis at this time, and that I have another visit with my neuro scheduled in less than two months, I'm inclined to wait until at least then. I will mention to my doctor (for the first time) that I am a qualifying veteran, and see if he (or the ALS clinic coordinator) has any advice to offer.

What I've read on-line since yesterday assures me that I probably do NOT need to try to opt in to an expensive long-term disability insurance during next month's open enrollment. When (and if!) I am diagnosed with ALS, it seems that I will be eligible for service-related disability benefits.
 

ZenArcher

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Without an actual ALS diagnosis the VA can't do anything unless you can prove service connection for your current issues. If you have the misfortune of getting an ALS diagnosis the VA will take pretty good care of you and your family.
 

Miss

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In the Land of Cotton
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I agree with ZenArcher and SadieMae. Don't bother to contact the VA until you have a diagnosis from an outside doctor. Because we had an outside diagnosis, we were not put through anymore testing with the VA. Also, if you have a chance for long term disability insurnace, life insurance, long term care insurance, etc. you should definitely buy it. If you have ALS, you will more than get your money's worth.We have learned that you can not be over insured with this disease.
 

sadiemae

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We also did not have to go through any testing through the VA. We were given advice when we first filed to remember that the VA is not your friend. You are filing a claim against them. Do get copies of your DD-214, certified copies of Birth and Marriage certificates now, in case you need them.
 

Beach Bum

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I was called by the VA on Fri the 29th,was not home but my daughter,future care giver took it.We are on the approved list,we are shocked by what the VA is offering,man if you have that DD214 get iy rolling!
 
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