Does anyone have experience with Walter Reed?

[Tony292]

So I am in a bit of a predicament. I am an Army officer (Captain) with 16 years of service currently serving as a recruiting company commander in Ohio. I am closer to an Air Force Base than an Army base, so I see a Neuro at wright Patterson Air Force base in Dayton where the chief of neurology has diagnosed me with MND. This Nueor has flat out bluntly stated thati will be in. A wheelchair in 2 years (only 40 years old and slow progression thus far) and that he is pretty certain that i am in the early stages Of ALS. This Air Force Doc told me to come back in 3-6 months to confirm clinically definite ALS in a follow up EMG. Stay with me now.... The Air Force cannot kick out or medically retire an army guy... But my Army brugade commander (Colonel) has found out about my medical situation. And so now I have a referral in for me to go to Walter Reed Army medical center... I have no idea what to expect there! S many "wounded warriors" and heros, guys who have lost limbs, eyes, burn victims, etc. the Army puts a halo around every wounded warrior's head... But nothing for the "Ill" or "sick" warriors... It would be better fr an Army guy to get all four limbs blown off in Afghansitan than for the same person to serve valiantly in Afghansitan and develop ALS 4-5 years later... But that is off topic for now...

Walter Reed is at the forefront when it comes to traumatic brain injury, amputees/prosthetics, and other war wounds, but DR Google tells me nothing about Walter Reed and thier level of expertise when it comes to ALS. Does anyone here have any experience with Walter Reed and specifically getting an ALS diagnosis there?

 

[Jeff Long]

Tony,
You're killin' me... I swore off posting on this board 2.5 months ago but still read occasionally and your post caught my eye.
I am a Mustanger also (I'm assuming you are) and retired in 2008 after 23 years, and 3 years before my diagnosis. Served in the Marine Corps and the Air Force, aboard Army bases and Navy subs... so the idea that "The Air Force cannot kick out or medically retire an army guy" has me shaking my head. The rules for retirement, medical or otherwise, are DoD regs and not service specific.
So, a couple of random thoughts/ideas...

- There are plenty of neuros between Ohio and Walter Reed that can give you a second opinion or confirm a diagnosis. A referral is all that is needed, and you can get that from the doc at Wright-Patt. Not sure why the Commander is making appointments, but if he is he ought to be finding the best care available, which may or may not be at WRAMC. There's a multi-discipline ALS clinic in Columbus, OH... I'd go there.

- If/when ALS is confirmed, you'll find your comment that "It would be better for an Army guy to get all four limbs blown off in Afghanistan than for the same person to serve valiantly in Afghanistan and develop ALS 4-5 years later" is one you'll wish you could take back. The VA & PVA will take care of you in ways you cannot imagine, and in ways that non-vets can only dream of. And you and I returned from OEF/OIF with all four limbs. We have our own struggles, which don't need to be compared to our compatriots' struggles.

- The idea that the neuro at WPAFB can predict you're wheelchair-bound in 2 years is a load of huey. If he can do what no one else can - predict the progression of this monster so surely - then tag along with him... he's going to be one rich mo-fo.

- Hang tough, and we're all hoping this turns out to be the Trash-can-istan spotted fever or something else treatable! FWIW, there are a lot of smart folks here who can offer you some great info and support. I'm not one of them, but I slept in a Holiday Inn Express last night! Before the next neuro visit you need to supply yourself with all the right questions and the right frame of mind. Neither is a small order, but do-able.
Jeff

 

[Bad Balance]

Wasn't this the hospital with the rooms in scandalous conditions
Try for an ALS clinic closer. They see so many cases that they can diagnose almost just by watching you....also you will have access to more specialists in one sitting

 

[BK2011]

Tony,

I concur with Jeff. Go to an ALS Clinic for a second opinion. You need to see a neurologist familiar with ALS, sees it multiple times a day, everyday. Hopefully, they'll tell you it's not ALS. If they tell you it is ALS, well that's bad news and you'll find that some of the other wounded vets you talked about will have it easier than you. With a positive diagnosis its time to "ruck up" and deal with a particularly nasty disease.

Being in the service you are twice as likely to have ALS as those that have never been in the service. Because the numbers clearly show a connection, ALS is considered service connected and you start out with the VA as 100% disabled for compensation. You also are fully covered for medical and that is huge with this disease. The VA will help with medical equipment you'll need. My VA is sending out a rep to look at my house and help figure out what needs to be done to make it more handicaped compatible and there is grant money to help with that. You served, the VA will do all it can to take care of you.

Good luck.

BK

 

[mysticunicorn66]

Seek out an ALS Clinic neuro for a second opinion. That is where I took my sis (US Army Reservist) when local docs were chasing their tails and couldn't figure out what was going on with her.

 

[Atsugi]

Tony, my wife (RIP) and I were Air Force and she got VA benefits for ALS. I don't see any need to wait. If you have ALS, it will show up on an EMG, and you can get that EMG anytime. It would be worth it to pay out of pocket to get an early EMG. If you have ALS, we're talking 7-10,000 monthly benefits, plus half a house and a van. If you have ALS, a time will come when you need those benefits.

 

[MaxEidswick]

>Walter Reed is at the forefront when it comes to traumatic brain injury, amputees/prosthetics, and other war wounds, but DR Google tells me nothing about Walter Reed and thier level of expertise when it comes to ALS. Does anyone here have any experience with Walter Reed and specifically getting an ALS diagnosis there?

Sorry, Tony -- no experience with Walter Reed; however I concur with others here that US Military and vets are very well treated by the VA. For diagnosis, I learned that ALS specific clinics are best for diagnosis and help with the PVA, etc. I went to Dr. Appel's clinic in Houston Methodist, but you can go here ALS Clinics - The ALS Association to find them in your geography.

Regards,

Max

 

[MaxEidswick]

my post went to the moderation black hole ...

 

[Mike in Maine]

The new Walter Reed is where the old Navy Hospital Bethesda was (believe its Wisconsin Ave), they were combined in BRAC. My family and I have been to Bethesda (old Sailor so it will always be Bethesda) a number of times while stationed in DC. In fact my son a Navy Corpsman has been stationed there. I have never been there for ALS/PLS issues, but the care received in other areas was great. Believe what they will do is use Bethesda as a base to manage your care and refer you out to other civilian clinics as needed, being in DC there is a lot there to help you.

Mike