[Amyotrophic Lateral Sclerosis (als)]

I have an appointment with the PVA tomorrow. Depending on what they have to say I make go back to Dr Bash for another try.

[Amyotrophic Lateral Sclerosis (als)]

I don't doubt his professionalism in the least or the fact that the money would be more than well spent especially if connection is awarded. However $5K is not something I can do at this point or more than likely at any point in the near future. I saw $2K floating around this board in other areas which would be possible. I will get back to him and see what he can do for me.

[Als Presumptive Bill]

I was in DC for ALS Advocacy Days from May 11 - 13. I have already gotten news back that some of the PA Representatives I visited with are cosponsoring the bill. This bill will grant service connection to all veterans with ALS regardless of time of service, place of service or time of diagnosis. Please contact your Representatives and ask them to cosponsor H.R. 5454.

There is also a bill on the Senate floor to establish an ALS Registry. ALS has been shown to strike vets more than twice as often as civilians. Please contact your senator and ask that they cosponsor S.1382 if they have not already.

For any easy way to contact your state and federal officials you can use the ALS Association advocacy page at: http://capwiz.com/alsa/home/

[Amyotrophic Lateral Sclerosis (als)]

That is what bothers me they didn't address his statement at all. They didn't address any of the evidence I provided.

What follows in an excerpt from one of the additional evidence letters I sent to the VA. I included the referenced studies, medical records and EPA documents.

From 1994 to 1996 I served at the Knoll's Atomic Power Laboratory Kesselring Site D1G facility. The D1G facility was housed inside a large Horton sphere which was built in 1962 to house and contain any explosion from the then liquid sodium cooled reactor. The facility was not vented to atmosphere so that any chemical vapors within the sphere were concentrated due to the lack of air movement and exchange. Additionally the Horton sphere was covered with urea‐formaldehyde foam insulation (UFFI) and lead based paint. Because of the age of the buildings and equipment much of the electrical insulation and electrolytic fluids used in the wiring was filled with polychlorinated biphenyls (PCBs).

In a recent study released by the Harvard School of Public Health it was found that, "[p]eople who reported that they had regular exposure to formaldehyde, however, were 34 percent more likely to develop ALS than those with no exposure to formaldehyde."2 One of the symptoms of formaldehyde exposure is an irregular heartbeat which I was treated for in 1996 while attached to the D1G prototype as documented in my medical record.

As a treatment for the irregular heartbeat described above I was prescribed Toprol‐XL as stated in my medical records. Metoprolol crosses the blood‐brain barrier and has been reported in the CSF in a concentration 78% of the simultaneous plasma concentration. Plasma levels achieved are highly variable after oral administration. Only a small fraction of the drug (about 12%) is bound to human serum albumin. Metoprolol is a racemic mixture of R‐ and S‐ enantiomers, and is primarily metabolized by CYP2D6.3 Studies have linked CYP2D6 to an increased risk of ALS. This suggests that possession of a CYP2D6( allele may be a risk factor for the development of ALS, possibly conferring a 'gain of function' imposed by the mutation or reflecting linkage disequilibrium to a nearby susceptibility gene.4

Lead has been known to cause neurological symptoms for some time. Due to the age of the D1G facility as well as the U.S.S. Theodore Roosevelt, the contents of the Hogback Road landfill on the Kesselring Site (see enclosed Site Record), the use of lead in reactor plant shielding and soldering and welding as

mentioned in my previous submission my exposure to lead, lead dust and lead vapor should be a given. Risk of ALS was associated with self‐reported occupational exposure to lead (odds ratio [OR] = 1.9; 95% confidence interval [CI] = 1.1‐3.3), with a dose response for lifetime days of lead exposure. Blood and bone lead levels were measured in most cases (N = 107) and in a subset of controls (N = 41). Risk of ALS was associated with elevations in both blood and bone lead levels. ORs were 1.9 (95% CI = 1.4‐2.6) for each microg/dl increase in blood lead, 3.6 (95% CI = 0.6‐20.6) for each unit increase in log‐transformed patella lead, and 2.3 (95% CI = 0.4‐14.5) for each unit increase in log‐transformed tibia lead.5

The only response I got to this was that the VA determined asbestos was not a cause of ALS. This is just a small portion. In total for the two evidence packages I have sent there are about 160 pages of evidence and none of it has been discussed in more than passing.

I understand Dr. Bash does a very good job but he has quoted me a price which more than doubles what I have seen anywhere else on this site. I simply can't afford it.

[Amyotrophic Lateral Sclerosis (als)]

Thank you.

[Amyotrophic Lateral Sclerosis (als)]

In regards to the evidence I submitted they mention the evidence only and as such out of context but do not address it.

I assume SMR is my medical records and no there is nothing relevant to ALS.

The letter from the Director of Neurology was specific to my case and references me by name.

The claim for ALS was initially denied June 18, 2007. I then submitted additional evidence and was denied again May 9, 2008.

I can't afford Dr. Bash. I've spoken with him but the price he is asking for is thousands of dollars out of my price range.

PVA is the organization representing me. POA is a new acronym for me.

As far as needing a strong medical opinion I thought I had furnished that with the letter from my neurologist, I also had a letter from my primary care physician. As I said I have contacted Dr. Barson also spoken of here for an IMO.

Thank you for your reply.

[Amyotrophic Lateral Sclerosis (als)]

I am a Gulf War vet '92 - '00 with service in the Gulf for the Operation Southern Watch, Deliberate Force, Allied Force and Noble Anvil. I was diagnosed with ALS '07 at the ripe old age of 38. I do not have documented symptoms in my medical records but have supplied personal testimony, a corroborating buddy letter, letter from my wife and sister in law stating that I had cramping, twitching and fasciculations during the last two years of active duty service. I also provided a letter from the Director of Neurology and head of the ALS clinic in Hershey stating that the symptoms "most likely represent the initial stage of the illness."

I have also included multiple studies and exposures showing increased risk of developing ALS and studies showing that the time from disease onset to diagnosis can exceed 10 years. I then provided appeals cases showing connection with contradictory symptoms, no symptoms, exposure to unknown substance and diagnosis after 35 years.

I received my denail which states, "In the absence of evidence to show that this condition was incurred in service or aggravated by service or manifest to a degree of 10 percent or more within one year of discharge from service, service connection is not established." The did not address I am working with the PVA but in all honesty they have done little more than act as a mail courier to date. I have open files with both my congressman and senator as well as letters of inquiry from the White House.

I have contacted Dr. Barson concerning an IMO but have not heard back yet. I would appreciate any suggestions. I would also like to know does the one year to submit additional evidence before the claim is closed change following another denial? What I mean by that is my initial claim was place in May 2007 and denied in June 2007 so I had until June 2008 to submit additional evidence. I did so and was the awarded for tinnitus and a thumb fracture but again denied ALS this May 2008. Does that mean that I have until May 2009 now to submit new evidence for ALS and the claim remain open?