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Just read over the post here and it looks like you are getting some good advice, I will add my two cents based on our family’s experience. I would contact the PVA for advice. The VA reps can be helpful and I do believe they will work in your best interest . I say this as 23 year retiree with many friends who have gone through the VA for various disabilities. However I think they can be overworked and deal with such a range of issues that its hard for them focus on any one aspect. I believe that their competence can vary as well and if you find one that you don’t feel is meeting your needs, you should not hesitate to go to another. Finally, as anyone who has served in the military knows, If you don’t get the answer you want ask again. The PVA reps we have dealt with have been very helpful. They seem to know this part of the system very well and perhaps more importantly know the people at their local VA. They are not part of the VA so if you are truly worried about the VA working in their own interest instead of yours I would state here.
I’m not sure I agree with not seeing a doctor who is associated with the VA. This of course just my opinion but I think if the VA has questions they are going to send you to one of their doctors any way. We had a ALS diagnoses in hand but also followed up with the Duke ALS clinic, who have strong ties with the VA. In the end I think this just made our case stronger and expedited the process. If you read through the forums you can find horrible stories about dealing with the VA. I’m not sure how our experience would have change if we had started with the VA but going through the PVA has been wonderful. Quick efficient and relatively painless, I hope your experience is as good.
VA benefits are very good. Grants to help you modify your home, purchase a vehicle and monthly pay as well as the veteran healthcare system and death benefits. I would also suggest that you look into state benefits. I have not done this yet but hope to get to it soon. I believe many state have benefits for disable veterans. These benefits are different from state to state and are not usually well advertised. If I find anything out I will post it here.

Bill
 
we just went to va hospital for their dr to ok my hubby's claim. took 15 minutes and no testing, but my hubby has lost use of right hand, left is almost gone. many dr have said everyone is different & als can slow or have growth unexpectedly. good luck!
 
I also recommend waiting until you get a firm diagnosis. Find your DD214 or go ahead and request one from the archives. That takes a while. As soon as you get the diagnosis, call the VA and then call the closest PVA rep. Begin getting copies of all your medical records now. And request copies frequently for any doctor outside the VA. Our experience with the VA has been great so far, and quick. All the delays have been on my part...getting info together. You will automatically be rated at 30%, then you have to go through several appointments with different departments to get the ball rolling with the VA, but the benefits are great. Ask for whatever you need, more than likely they can get it for you.
I would DEFINITELY take out long term disability insurance. There is a 6 month waiting period on Social Security disability. The VA benefits (compensation) are great once you hit 100% disabled, but no so much before then. Don't get me wrong, its better than nothing but still. If I only knew then what I know now!
Good luck!
 
There is a bill pending that will rate all Vets with ALS at 100% to begin with. The easiest way to get an increase to 100% is to request an increase, then they have to schedule a C&P exam within 30 days, and you usually get up to 100% plus some SMC.(Special Monthly Compensation)
 
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