Military veterans.

[MtPockets]

I was just told that I had to get my 3 bids on the construction before the plaqns were even finished and send to St. Peterberg office and then expect 4 to 6 months before the approval and or release of any construction money.
One step forward 4 back.

[ZenArcher]

You can waive the requirement for additional bids. I only got one bid because there was only one builder in the area that was qualified.

[piperl4]

Originally Posted by ZenArcher

Sorry you got the diagnosis. The first thing you need to do now is contact the PVA. They have worked closely with ALSA and have the best track record for getting PALS connected quickly and correctly.

Just because the VA will treat you doesn't mean you can't go elsewhere. I go to the ALSA ALS clinic in Hershey but get all my equipment and meds through VA. I've been connected for over a year now and my only complaint thus far was the length of time it took to get my SAH grant approved and construction started. Beyond that the VA in terms of health care and compensation have been exemplary.

Currently I have Blue Cross and Johns Hopkins has put me into supportive care system so I think it will be ok. They are all working on the paperwork for the VA as we speak and are pretty cooperative about it. I am not sure how lone it will take the VA to hear the case but the DAV told me they are pushing the presumtives through pretty fast. I guess in VA terms that means before you die. As I live in a 2 story home I have already moved downstairs but looking at moving to a single level home that can handle my needs much better. I am really new to all this and its going to take me and my wife time to adjust to first the diagnoses and 2nd the changes that are comming to our lives. I am doing better than her at this point as she is the one who really will face the hardest battles. I currently have the DAV handling my case but do you find that the PVA is more adapt at handling ALS cases as I notice they say some cases are done in a few months. Of course that is what the DAV said to. I am just beginning the journey but have not given up yet and will never surrender.
Dave

[piperl4]

I have looked up PVA on the internet and there is a ton listed. Which one is the best for Veterans. How many letters do I need. I have a bery well written one from my Primary care who has cordinated my care with Johns Hopkins and other neuroligist for over 6 years now and I have one from my local neuroligist. Will that be enough to get it through or will I need more. I have 400K worth of test done so pray the VA does not want to tear me up even more as each one hurts like hell.
Dave

[ZenArcher]

Contact the PVA office closest to you. As I said in your other thread, if you have an ALS diagnosis you don't need any letters.

Step 1: Contact your local ALSA office. Let them know you've been diagnosed and are a vet.

Step 2: Contact the PVA office closest to you. Let them know you've been diagnosed with ALS and they will take care of you.

I had no further testing by the VA other than to see what my level of disability was. This included a pulmonary function test, raise your arms, squeeze my fingers, etc.

[piperl4]

Originally Posted by ZenArcher

I have been working on my claim for ALS for 16 months now. To date I've been denied twice. If you haven't spoken with a veteran service organization such as Paralyzed Veterans of America (PVA), Disabled American Veterans (DAV) or the American Legion you need to do so right away.

How did you get left out of the presumtive clause? It baffles me how one person can get it in 3 week and soneome like you 16 Months. That is exactly whay I am really taking my time. I originally filed a claim on upper motor neurone knowing all I was doing was starting the clock but that they would drag their feet. Now I am trying to get my leters from Doctors perfect which I think I have done now. Each letter spells out ALS in great detail all the test that were done and everything that was ruled out. I got My primary care to cordinate it and he was great. Now I have one from him, my neuroligist, and one form the neurology dept at Johns Hopkins then one from the surgon who has cut me 6 times now plus one from when I lost my balance and it cost 12K to repair my hand as it went through glass window. I do not want to give the VA any wiggle room. However I see some people just bring one letter from their GP saying all the specialist did test and the person has ALS and that was it. I am never that lucky. Am I overkilling the issue

[piperl4]

I wish we had somewhere on here to post filing letters less the perssonal data of course. Its been hard for me as I started out with a simple Upper Motot Neuron Problem that existed in service, the I went to PLS, Then after the last round of test of about 2 months they came back with full blown ALS. I really wish I had educated myself before the first time I filed. I have learned so much on here that I had no idea about how or what to file. I still feel like I am in the dark as to what is going to happen and how long. I would think that as of Monday the DAV will receive the Letters stating the whle saga a a certified diagnoses of ALS that the VA should not have that much to question as I cannot think they can put themselves above john Hopkins.

[sadiemae]

I dont know how close you are to the regional office, or your service officer, but in our case it was same city, and we hand delivered everything and did everything from filing the first claim, going in when we had questions, ect, in person. we were advised to do this so we wouldnt end up a "brown envelope". This may be why our claim was resolved so quickly. Also, as Jeff has mentioned, each regional office is different in there process. Lori

[ZenArcher]

I didn't get left out of the presumptive clause. When I first filed my claim there was no presumption for ALS. You can handle your claim however you want with whomever you want but I'll say it one last time.

Step 1: Contact your local ALSA office. Let them know you've been diagnosed and are a vet.

Step 2: Contact the PVA office closest to you. Let them know you've been diagnosed with ALS and they will take care of you.

90% of the problems I hear are from people who didn't use PVA.

[DgtofTNfan]

I second what Jeff is saying. My Dad was diagnosed in Feb and started his first check at 100% in May. The PVA rep was great. He knew just what wording to put in the forms that the VA would expect to see. The PVA rep also knew the ALS neuro and had already educated him on what statements needed to be in the diagnostic letter to support the claim.

[piperl4]

Zen, I hear you and think that your path sounds logicial but I have been with the DAV since 1970 1 month after returning from Viet Nam. They have been good to me in the past and dumping them now is like getting a divorce. Does anyone out there feel the DAV can handle an ALS Claim? I guess that is where this forum shines as I never knew what PVA was till on here. But I just do not even know where to Start. Delaware is so small we all use the same outhouse. I guess there have not been enough claims that made it through to get any kind of base line. I have read vertually every appeal in the records trying to get a feel for what they are looking for when rating you. The story of the person rated at 60% vs the same identical case rated at 100% really hit home. I am in a financial bind without an income and my mortgage company is not going to be of any help in any way I do not beleive. There just is not enough information out there yet with which to follow. The closeses thing I have to a law library is you guys right now. Truth be told you all would make better lawyers than the VA has.

[piperl4]

Originally Posted by bpayton

This is my first post but have been reading forum for over a year.I was dx of PLS in Apr 2006.I contacted ALSA of GA and they are trying to get me info showing PLS is a form of ALS and should be covered under the persumptive ruling but you never know with the VA.
Thanks Billy
PLS-2006

The whole VA system is about the same level of mystry as ALS and PLS itself. I started out with PLS and was told to apply and that Johns Hopkins would support the two being just differant forms of the same thing. In the meantime I finished another barage of test and sent me to 2 more doctors and now its full ALS. While I guess that is good for filing with the VA it still leaves me thinking about the number of people with PLS. If it is so rare then there sure seems to be a lot of people on here with it, so I am confused by that. I know I had a lot of pain when they said it was PLS but now with ALS its a whole new gambet of things to contend with. This last round they did nothing but test for the Lower Neuron stuff and it was positive across the board. I just hope I do not have the hassles that most have with the VA. Being already 70% I have a bit of a disadvantage as I have to be 90% for the ALS to get to 100% with the ALS yet I will have a mininum of about 160% if you added them up which they don't. I figure it takes about 20 differant disabilities to get to 100% with the VA. I had a good tip to look for a good PVA but have not found any in or around Delaware yet, I am on supportive care only right now so they really are not offering any more testing just things to make me feel better. I do take the pain meds and they do help me function. I know some do not like them but I still have to function to pay some of the bills still. Such a rat race.

[ZenArcher]

Delaware PVA
VAMROC, Room 26
1601 Kirkwood Highway
Wilmington, DE 19805
302-633-5325

I have nothing against the DAV. They are a great organization but to use your analogy using the DAV for an ALS claim is like hiring a divorce lawyer to handle a murder charge. The DAV deals with all vets. That means you're in with people claiming flat feet, sinusitis and whatever else. The PVA deals with paralyzed vets. That means they are focused on things like TBI, MS, ALS and the like. PVA has worked closely with ALSA to ensure vets with ALS are taken care of quickly and efficiently. They know the ins and outs of the auto grant, the housing grants and special monthly compensation but as I said it's your claim to do as you please.

[piperl4]

Originally Posted by ZenArcher

Delaware PVA
VAMROC, Room 26
1601 Kirkwood Highway
Wilmington, DE 19805
302-633-5325

I have nothing against the DAV. They are a great organization but to use your analogy using the DAV for an ALS claim is like hiring a divorce lawyer to handle a murder charge. The DAV deals with all vets. That means you're in with people claiming flat feet, sinusitis and whatever else. The PVA deals with paralyzed vets. That means they are focused on things like TBI, MS, ALS and the like. PVA has worked closely with ALSA to ensure vets with ALS are taken care of quickly and efficiently. They know the ins and outs of the auto grant, the housing grants and special monthly compensation but as I said it's your claim to do as you please.

Well, today has only been 5 days since I received the diagnoses of ALS and today I received a letter from the DAV as I had already faxed it to them that to quote"
As the accredited representative for the above referanced claiment, we are sumitting the attached material as a claim for benefits administered by the Department of Veterans Affairs (VA) Please take action to consider the following.
1. Entitlement to service connection for ALS, orovident under 38 C.F.R. 3.318

In lieu of VCAA Notice Response, our client advises he has no additional evidence to submit, please adjudicate our clients claim following all pertinent development based on the evidence now of record.

PLEASE DEFER ALL OTHER PENDING ISSUES DUE TO THE TERMINAL NATURE OF THIS CONDITION.

It is requested that all appropriaite development, to include conducting any necessary VA examinations be completed as soon as possible.

The VA received it today, keep in mind they already have on file about 400 pages of documentation and test from Johns hopkins, other neuroligist all with the same finding.

So I guess I cannot change tracks now just wait it out and see where this goes. I have already had one C&P about 2 months ago but I have no idea what the heck they were looking at. He wanted to know why I couldn't walk. A real jirk to put it politly.

Dave

[piperl4]

Jeff, once I get an initial ruling I will have more time to think and contemplate things. I got to be honest right now I am operating in the pure fear mode, and my wife is even worse. we both just are not thinking rationaly yet till this sinks in. Maybe I pray it never does. I did contact the PVA today and they are sending information and I told them the whole story and that the DAV was involved and they were really nice about it and said they have worked with vertually every agency with no problems. I read them what all had been sent recently and they said the letter from the Doctor nailed it perfectly and they could tell he was an ex VA doctor as he knew exactly how to spell it out for them and leave no stone unturned. He named all the exclusions that were done the test that were done and the exact symtoms I have. He condinced a year of testing to one page. I pray I have no more exams as I am so wore out and still have more operations to go through starting again 11 dec on the secondary issue of dioxin poisioning of the nervious system. Right now the ALS is far less painfull but I have been in the ER 3 times for not being able to breath and loosing speach now tells me its progressing quicker. Stack 5 herniated disc on it and darn it smarts. I am already service related for those and head injury and had put in for an increase just before all this that is why they ask that the other issues be put on hold.
You guys are a blessing as there is just no one else to talk to about it. My wife and I start counsling together next week I hope that helps us learn to be able to talk about it as right now we both do not know how to share our grief properly and I love my wife dearly and I know she loves me and yet we cannot talk. Then today I read Cindy Williams. She is a Assistant Director for National Security in the Congressional Budget Office...... ///////// said that us Airmen were not worth what we were paid. I have never been a person of rage but between the two I almost lost it. But then remembered I could not get anywhere to do anything about it. Ok I did show some humor so I should get a gold star.
Dave