My husband is in the the same boat too, we just filed an appeal with the VA.
We went to the Cleveland Clinic, Las Vegas last week and the doctor there agrees that the line between ALS & PLS is pretty blurred. He asked me to write a history of Ray's disease and our claim that he will include in a letter to the VA to support our claim. I copied it below. He also agreed to send a copy to Senator Harry Reid and the chief neurologist at the VA in Reno ( who also sees PLS as a form of ALS).
I can only suggest you contact your senators & congressmen to help us fight this fight. Congress can direct the VA to look at the science and expand their definition of ALS. At the very least to direct the VA to check their computerized records and find out the rate of PLS (and other motor neuron diseases) among veterans. ALS was found at almost twice the rate, which is why they presume it is service connected. Of course they included people with PLS in that research!
Good luck! I'll let you know of any developments - hope you do the same.
VA CLAIM
I contacted Senator Harry Reid and the VA in the September 2010 to find out why veterans with PLS were being excluded from benefits even though they had been included in the reseach on veterans with ALS. We were advised to file a claim with the VA for service connected disability. We filed a claim December 16th 2010 on the basis that PLS was a form of ALS and received a denial of the claim dated February 22nd 2011.
The denial was based on the fact that Congress has not recognized PLS as a service connected disability - (though if PLS is a form of ALS there would be no need for Congress to do so…?) The denial also stated that the clinical distinction between ALS and PLS was clear, only the upper motor neurons were impacted in PLS. This would seem to be contradicted by the following studies and a substantial body of medical opinion. (
https://sites.google.com/site/veteranswithpls)
Primary lateral sclerosis: further clarification. J. Neurol. Sci., 185: 95-100, 2001b.Le Forestier N., Maisonobe T., Spelle L., Lesort A., Salachas F., Lacomblez L., Samson Y., Bouche P., Meininger V.
“Our results provide evidence that degeneration in PLS is not restricted to the upper motor neurons but also affects the lower motor neurons. The distinction between ALS and PLS is related to the degree and stability of lower motor neuron involvement. In view of the similarities with ALS, we consider that PLS may represent a slowly progressive syndrome closely related to this disease.”
Primary lateral sclerosis: further clarification. [J Neurol Sci. 2001] - PubMed - NCBI
A case of presumptive primary lateral sclerosis with upper and lower motor neurone pathology. Short CL, Scott G, Blumbergs PC, Koblar SA.
Department of Neurology, The Queen Elizabeth Hospital, South Australia.
"A pre-mortem diagnosis of PLS was made, however autopsy findings demonstrated both upper and lower motor neurone involvement. We believe these findings support the view that PLS is not a discrete pathological entity, but that it is a part of the range of motor neurone diseases that present with predominant but not exclusive upper motor neurone involvement.”
A case of presumptive primary lateral sclero... [J Clin Neurosci. 2005] - PubMed - NCBI
Neurology. 2005 May 24;64(10):1778-9.
Congress has acknowleged the link between military service and ALS. Given the close relationship between ALS and PLS, it seems reasonable to assume that same link would exist with PLS. At the very least the VA could check their computerized medical records and ascertain the rate of PLS (and other motor neuron disease) in veterans compared to the general population. Just because PLS is a very rare disease should not mean that these veterans get ignored.
I know of two veterans who have been reclassified from PLS to ALS or “upper motor neuron ALS”. One of them lives here in Nevada and another in Georgia. Ray maybe only has a few years left but there are younger veterans fighting both this cruel disease and the VA. We are just requesting the VA and Congress to take a look at the science and determine if these veterans are being fairly treated.
Many thanks for your consideration,
