Veterans with PLS

[ncollins]

Don't know why our thread got closed down but I wanted to share this info with any veteran who is trying to get service connection through the VA.

My husband has had PLS for 30 years and we are appealing the VA's decision not to grant him service connection. His neurologist from the Cleveland Clinic has written to support his claim on the grounds that PLS is a form of ALS. He cited the research papers below to back up this claim:

"Primary lateral sclerosis, hereditary spastic paraplegia and amyotrophic lateral sclerosis: discrete entities or spectrum?"
Strong MJ, Gordon PH.
Source
"The greater, more controversial problem lies in separating ALS from PLS. Indeed there is currently little evidence to support that these are discrete entities, other than disparate prognoses. Modern neuroimaging, neuropsychological testing, neurochemistry and immunohistochemistry indicate that in most instances, the similarity between these two multisystem disorders outweighs their differences."

Primary la... [Amyotroph Lateral Scler Other Motor Neuron Disord. 2005] - PubMed - NCBI


"Does primary lateral sclerosis exist?"
A study of 20 patients and a review of the literature

Nadine Le Forestier1, Thierry Maisonobe2, Ambre Piquard1, Sophie Rivaud3,Lise Crevier-Buchman4, François Salachas1, Pierre-François Pradat1, Lucette Lacomblez1,5and Vincent Meininger1
"The lack of lower motor neuron involvement in PLS is considered a key factor in distinguishing PLS from ALS. However, physical and electrophysiological evidence from the present study suggests that this is not necessarily the case..."

Does primary lateral sclerosis exist?

You might want to include these references in any appeal to the VA. I would be happy to send the full research papers to anyone who contacts me or is there a place I can post these articles on this site?

 

[ncollins]

I should have added our neurologist's comments on these research papers:

"Please find the attached comprehensive review of whether ALS and PLS represent different entities which examined a large number of studies and other data in the literature and concluded that they likely do not, and are more likely a spectrum of disease.
Please also find the attached longitudinal study of PLS patients which attempted to determine if they were clearly distinct from ALS patients as the condition evolved over time using a battery of investigative testing, and which concluded (similar to the review article) that PLS and ALS likely do not represent separate clinical entities based on this extensive battery of testing over time but rather are likely a spectrum of disease."

 

[sadiemae]

Glad you have not given up. I know How it feels being denied and trying to get the VA to use common sense. I have to fight Both the VA and Congress to try and get Army National Guard members benefits.

 

[TxRR]

I would like a copy of the research papers. I sent you a PM with my email address.

 

[ncollins]

Hope they came through OK.

 

[TxRR]

Got them and read through them last night. They make some very good points. My favorite is where they say ALS and PLS are more similar than different. Also, that ALS and PLS are one entity but on different ends of the spectrum.

Does anyone know of a doctor or group of doctors that specialize in writing medical opinions? My doctor has written me two letters and I think that's about all I'm going to get out of him.