Vets with ALS

I am in the process of attempting to establish service connection for my ALS. As I am sure most on here know you must show symptoms or be diagnosed within one year of discharge or have served in the Southwest Asia Theater of Operations anytime during the period of Aug. 2, 1990, to July 31, 1991. I have spoken with people within the ALS Association, VA, PVA and legislators to see what needs to be done in order to get the presumed service connection time extended. I have been told that things are in the works but have heard nothing else.

The first post on this "forum" was in July of 2006 and now a year and a half later there are a total of 51 comments. I understand that there is a Veterans Affairs Issue Team within the ALSA. When do they meet? Is it open to all vets? What is being addressed? What has been accomplished? As a newly diagnosed PALS I can attest to the fact that the need for information becomes extremely important and although I was given some resources I feel the process is in need of work. I also feel that it is necessary to get some of this information into the hands of active duty personnel so that they can report any suspect symptoms and get them included in their medical records.

I've written the President, senators, representatives, Montel Williams, Dr. Phil, Oprah, my local newspapers and TV stations. I've talked to people within the ALSA, PVA and VA and at one point I was actually told, "I wouldn't spend my time trying to change VA law." If only I could get my hands through a phone line.

In March 2007 Senator Murray of Washington reintroduced legislation to help veterans with Multiple Sclerosis. I would like to highlight some points about this legislation and what brought it to the floor. The entire story can be read here: Senator Murray

(Washington, D.C.) - Today, U.S. Senator Patty Murray (D-WA) reintroduced legislation to help more veterans who have Multiple Sclerosis (MS) qualify for disability benefits from the Department of Veterans Affairs (VA). Under current law, veterans have a deadline of seven years after being honorably discharged to connect their MS to their military service. Murray's bill would remove the seven-year limitation.

Points here:
1. Reintroduced - this bill has been before the senate in the past
2. Seven year - the bill is attempting to remove the 7 year deadline, remember 1 year for ALS

Multiple Sclerosis is a chronic neurological disease with symptoms ranging from clumsiness to blindness to numbness. The problem with the seven year limit for Multiple Sclerosis is that a person with MS may not show symptoms for years even though they have the disease. According to the VA's MS Center of Excellence, "there is considerable evidence that MS precedes symptoms in most patients. Most patients with MS have several lesions [shown on an] MRI at the time of their first symptom."

Points here:
3. One of the studies which ended up giving presumptive disability to PGW vets (Aug. 2, 1990, to July 31, 1991) with ALS states "Experts don't know what causes the disease, but they say it can take 10 years or longer to develop." The are also studies showing that the development of ALS following severe electrical shock and the resulting neurological trauma can take years (mean delay 44 months).

A September 2005 Seattle Post-Intelligencer article reported that, "of the 700,000 U.S. troops who served there in 1991, a disproportionate number experienced serious neurological disorders.

Points here:
4. The Seattle Post-Intelligencer!?!?! - The Institute of Medicine, National Institute of Health and several other peer reviewed, accepted and published studies have shown that not only are Gulf War vets but all military members more likely to develop ALS in some cases almost three times more likely. I think that falls into a "mine's bigger than yours" category.

More power to those with MS and their advocates but search as I might I was unable to find any published studies showing an increased relative risk of developing MS following military service. That being said why isn't there an ALS bill on the floor of the senate?

Some links:
Prospective study of military service and mortality from ALS

Occurrence of amyotrophic lateral sclerosis among Gulf War veterans

VA Testimony of Lawrence Deyton, MD before Congress July 26, 2007

Amyotrophic Lateral Sclerosis in Veterans: Review of the Scientific Literature (2006)

Motor neuron disease after electric injury