Military veterans.

[Walter]

ALSA of GA

Billy, When you get the information, please share.
Here's what I have but like you said "you never know with the VA."

Primary Lateral Sclerosis:
A Variant, Subgroup, Subdivision and/or a Continuum of
Amyotrophic Lateral Sclerosis.

Primary Lateral Sclerosis (PLS) - a progressive neurological disease in which the upper motor neurons (nerve cells) deteriorate. If the lower motor neurons are not affected within two years, the disease usually remains a pure upper motor neuron disease. This is the rarest form of ALS.

Source: Johns Hopkins Medicine Neurology and Neurosurgery website
http://hopkinsneuro.org/disease.cfm/condition/ALS--
Amyotrophic_Lateral_Sclerosis

Primary Lateral Sclerosis and Progressive Pseudobulbar Palsy: These disorders are rare, slowly progressive variants of amyotrophic lateral sclerosis.

Source: Merck Manual - website
http://www.merck.com/mmhe/sec06/ch095/ch095b.html

PLS “is often referred to as a benign variant of Amyotrophic Lateral Sclerosis.”

Source: Spastic Paraplegia Foundation's web site.
www.sp-foundation.org/pls.htm#Different

Primary Lateral Sclerosis (PLS) – was first described by Erb in 1875. The clinical signs of PLS consist only of UMN signs. It is the rarest of all the forms of ALS.

Source: ALS Hope Foundation's website.
www.alshopefoundation.org/alsprimer.php#MNDclass

“Leonard van den Berg, University Medical Center, Utrecht, The Netherlands, presented evidence that primary lateral sclerosis (PLS), a disorder of just the upper motor neurons from the brain to the spinal cord, may be a continuum of ALS. PLS appears to occasionally have frontal lobe involvement as well.”

Source: ALS Association website.
www.alsa.org/news/article.cfm?id=1148

Dr. Bedlack's grants are all associated with ALS, commonly known as Lou Gehrig's disease and PLS, a variant of ALS. He has gotten grants for the 2007 year from the ALS association, MDA and others interested in solving the issues related to ALS and PLS.

Source: Associated Content Website
www.associatedcontent.com/article/161247/dr_bedlack_and_duke
_clinics_to_ receive.html?cat=48

The National Organization for Rare Disorders has PLS listed as a Subdivision of ALS.

Source: National Organization for Rare Disorders website
http://209.85.173.104/search?
q=cache:jnN6jHvPMKwJ:www.rarediseases.org/
search/rdbdetail_abstract.html%3Fdisname%3DAmyotrophic%2520
Lateral%2520Sclerosis+nord+primary+lateral&hl=en&ct=clnk&cd=2&gl
=us&client=firefox-a

ALS variants
EOM & Extrapyramidal change
Primary lateral sclerosis
Primary muscular atrophy
Western Pacific ALS

Source: Washington University, St Louis. Neuromuscular website.
http://neuromuscular.wustl.edu/motor.html

 

[TxRR]

Thanks for the info. Walter. I wrote a similar letter to my V.A. case worker hoping it would get some attention.

 

[ZenArcher]

As I'm sure you know anything can be service connected if you can show it was caused or aggravated by military service. Based on the wording of the ALS presumption which states:

§ 3.318 Presumptive service connection for amyotrophic lateral sclerosis.

(a) Except as provided in paragraph (b) of this section, the development of amyotrophic lateral sclerosis manifested at any time after discharge or release from active military, naval, or air service is sufficient to establish service connection for that disease.

(b) Service connection will not be established under this section:

(1) If there is affirmative evidence that amyotrophic lateral sclerosis was not incurred during or aggravated by active military, naval, or air service;

(2) If there is affirmative evidence that amyotrophic lateral sclerosis is due to the veteran's own willful misconduct; or

(3) If the veteran did not have active, continuous service of 90 days or more.

(Authority: 38 U.S.C. 501(a)(1))

[73 FR 54693, Sept. 23, 2008]

I don't think the ALS presumption will do you any good directly. You may be able to link PLS and ALS but I don't know that they will give you the presumption. I'm not trying to discourage simply share what I've learned in my 17 months of fighting thus far. The goal should be to link symptoms documented in your service medical records to symptoms of PLS. I haven't researched PLS but as an example for ALS there have been several studies showing effects on the sympathetic nervous system meaning any mention of irregular heartbeat could be used. If you can provide documentation in your medical records and studies showing a link the burden then falls on the VA to disprove.

It is not an easy thing to prove and the VA will fight tooth and nail. If you can get in on the presumption that would be great but I honestly don't think it will happen. I think the more reliable although much more difficult route is to show symptoms in your medical record whatever they may be along with the diagnosis and the nexus between the two. If you don't have copies of your medical records both service and civilian get them now and go over them. Next start searching PubMed and find everything you can. Share what you find either here or elsewhere and help each other come up with new angles.

I have provided well over 800 pages of studies, medical records, expert opinions, buddy letters and reports to substantiate my claim before the presumption went through. Although I'm still waiting for the official connection I would have gotten it even if the presumption hadn't been made based solely on the evidence. This is from the VA not a guess on my part. I'll be happy to answer any questions I can but you have to realize this is going to take work.

 

[TxRR]

I disagree with you Zen. I think the ALS presumption will work in our favor. How can you rule out one and not the other when they (ALS/PLS) are categorically the same (motor neuron diseases). They have similar causes and will have similar cures. The only difference is the extent of the damage (upper and low motor neuron vs only upper motor neuron).

It would be completely unfair for the V.A. to say: "you only have PLS at this time so we're going to deny your claim. Come back if it ever turns into ALS and we'll take care of you then". That is like say: "okay, your only paralyzed from the waist down. Come back when your paralyzed from the neck down and we'll take care of you then".

I spoke to my local ALS Assoc. rep. recently and she agreed that this was a new ruling that needed to be tweeked. Unfortunatley, since PLS is far more rare than ALS, most doctors are unaware it exists.

As far as proving service connection....I had no signs or symptoms when I was in the military so theres not going to be anything in my medical records. I went to sick bay one time for pneumonia. I spent 3 days in the hospital then returned to my unit.

 

[ZenArcher]

I'm not saying the presumption won't help but based on my dealing thus far I will say that those with PLS won't get in under the ALS presumption. I would be more than happy to eat those words. The VA isn't interested in what's fair they go by the regs. MS has had a seven year window for years when ALS had only one year. Was that fair? Of course not but that's what was written.

I won't argue that PLS often becomes ALS I know that is often the case but it's not what is written in the reg. I don't know if there are studies out there stating this explicitly or not. They may help your cause but the fact of the matter is the VA does not have to grant presumptive service connection unless the disease is stated explicitly in the CFR which PLS isn't. I agree it isn't "fair" but it is fact that they go by what is written not what should be.

As I said above nothing would make me happier than to be proven wrong and I would definitely persue this avenue but I don't believe it will work in most cases. I know I didn't believe I had any symptoms which could be related to ALS either until I started digging. Remember in most cases you can use anything which showed within a year of discharge as well.

 

[TxRR]

Walter,

Those are some great quotes. I hope you included those in your letter.

 

[bpayton]

Service connection

I ask my neuro at last vist what was the difference in PLS and Upper Motor Neurone Dominant ALS and he said nothing. He said in his opinion it was the same disease. I am going to try to get him to write a letter stating that his medical opinion is that they are the same disease.Walter thanks for the information and if I get any thing different I will post it.
Thanks Billy
PLS-2006

 

[Walter]

VA Interpretation

I did include the quotes as an attachment to my letter.
I noticed some of the links to the original source are not working but you can still get an idea where they came from.
ZenArcher, I fear you may be right about the VA following the regulations to the letter. That's why I feel someone high up in the organization might see how narrowly the regulation is being interpreted and change it enough to allow a wider interpretation. For example include variations of ALS, not limit the motor neuron disorder exclusively the classical form of ALS.
That's why I wrote the Secretary of the VA. I wonder if he will really get the letter.
However I think he should get a few more with the type of letter that Billy's doctor may write.
Just FYI I put the following in my letter.
"A fellow shipmate died two years ago of ALS. He and I met in boot camp. We then served together approximately 16 months on the Coast Guard Cutter Gresham where he had the bunk below me.
It seems more than a coincidence that we both developed variants of the same motor neuron disorder."

 

[CindyM]

the fact of the matter is the VA does not have to grant presumptive service connection unless the disease is stated explicitly in the CFR which PLS isn't.

When I first started working in local government, one of my older mentors had a saying. Every time I would get hot under the collar due to some stupid rule, she would say, "Take off your logical hat and put on your government hat!" :lol:

 

[bpayton]

Service connection

PLS veterans were included in the VA's ALS registry in Durham N.C. Iwas part of this registry.If they didn't thik PLS was a form of ALS then why were we included.
Thanks Billy
PLS-2006

 

[TxRR]

Does the regulation specify that it's only for the "classical" form of ALS? Maybe they don't realize there is a broader spectrum? PLS is very rare and most doctors don't even know it exists.

 

[Walter]

Dr. Peake

I was thinking about “the letter of the law” and Cindy’s quote “the fact of the matter is the VA does not have to grant presumptive service connection unless the disease is stated explicitly in the CFR which PLS isn't.”
Well, if the directive didn’t explicitly state PLS then changing the directive is a possibility especially since the person who wrote it is still in his position of authority.
I think, this is the time to write directly to the Secretary of Veterans Affairs because who knows how long he will hold that position. Particularly considering there will be a change of administrations very soon. We don’t know if Dr. Peake will stay on or be replaced.

What I am trying to say is, the time to write is now while the subject (presumptive/ALS) is fresh and the man responsible for the directive is still able to act.

VA's ALS registry in Durham N.C. has PLS classified as "Suspected ALS". Whatever that will mean to the VA, who knows.

 

[TxRR]

VA's ALS registry in Durham N.C. has PLS classified as "Suspected ALS". Whatever that will mean to the VA, who knows.

I wanted to include this in my letter but couldn't find it on the internet. Maybe, I wasn't looking in the right place. Do you have a link or instructions on where to go?

I think the CFR can still be ammended since it does not specifically rule PLS in/out. It's written in such general terms that's open to a wide interpretation. The VA could have simply stated it was for the classical form of ALS with no exceptions. This would have atleast indicated that they reviewed other forms such as PLS.

 

[Walter]

The GENEVA Study

TxRR
"Genes and Environmental Exposures in Veterans with Amyotrophic Lateral Sclerosis: The GENEVA Study" is a pdf file where I got the information about how the study classified veterans.
Here is the link. Just hope it works.
http://content.karger.com/ProdukteD...r=126911&ProduktNr=224263&filename=126911.pdf
If not try typing into Google: Genes and Environmental Exposures in Veterans
Several links will show up. Look for the one that has pdf at the end.
Every time I typed it in, it showed up in different places on the result page.
Here is a copy of the part about classification from the third page of the report.

"Each patient was classified into 1 of the following categories: clinically definite ALS, clinically probable ALS, clinically probable and lab supported ALS, clinically possible ALS,
suspected ALS (including progressive muscular atrophy, progressive bulbar palsy and primary lateral sclerosis), indeterminate or no ALS/MND."

 

[TxRR]

The link works. Thanks Walter.