Military veterans.

[tdamess]

my husband get v a help from the town's v.a. office as a welfare type thing for being out of workyou could probley go to your town hall or city's city halland get help with money to till something can come your way-best of luck

[ZenArcher]

It had better be helpful, I wrote most of it

You will have to go through a C&P (compensation & pension) exam before you will be given an increase in most cases. The C&P exam will be scheduled after you file for an increase. The simplest way to file for an increase is to contact your service organization which for most pALS should be the PVA and tell them that you want to file for an increase based on X. Now X can be a lot of different things such as increased weakness, lower FVC, loss of speech or general progression. In my case I would file after each clinic visit. If they said something progressed or something was weaker I would file based on that.

I thought I read earlier that you were having issues feeding yourself. If that is the case file for an increase based on the loss of use of both hands.

[MtPockets]

Thanks Zen I knew you would have the answer, but could not remember if I asked you before.
I amazes me hoe many times since I joined that members on the Forum had just the right answers to so many issues.
Have a great weekend.

[bpayton]

I got my denial letter in Feb. It didn't mention the new ALS ruling just that my medical records showed nothing to service connect it. I talked to my VSO about filing appeal and he said he wanted to do a reconsideration first. He took my print out from John Hopkins saying PLS is the rarest form of ALS highlighted it and sent it to VA. I got a letter from VA saying they had reopened my claim and were reviewing it. I still think they will deny it and it will have to go to BVA and this is where I think PLS has a chance of being added.
Billy

[piperl4]

I was diagnosed with PLS by Johns Hopkins and confirmed by a 2nd Neurologist, however Johns Hopkins said that for the next 2 years they are going to keep constant monitor on me as it could be ALS just takeing a slower path. I have been to the ER 3 times unable to breathe and other things but nothing they can pinpoint yet. I will be receiving a Baclofen pump into my spinal cord shortly to help the spacity. HSP has been totally ruled out as well as everything else. All in all I would say around $400,000 worth of testing so far to come up with the PLS and ?ALS. I am also a vet 70% currently so I put in a claim as I have a great deal of exposure to agent orange and Viet Nam service also. All my doctors cannot see why the VA does not look at them the same only PLS is much more rare and not in the news as much and of course is not fatal. That is if it stays PLS. It will be interesting to see how the VA reacts as it seems more vets than I thought have PLS also.

[piperl4]

For those of you looking for the info that bpayton posted I found it on Johns Hopkins Web site at ALS, Amyotrophic Lateral Sclerosis, Lou Gehrig's disease and he is dead on it says outright its the rarest form of ALS. As I have filed a claim and in progress I will send this as additional information and see where they go with it.
Thanks BPayton

[piperl4]

Interesting facts under the Elctronic Code of Federal REgulations is that ALs is under CFR Part 4 4,120 8017 Amyotrophic Lateral Sclerrosis Electronic Code of Federal Regulations: however I have read every thing in that section where it shoud be and Primary Lateral Sclerrosis is not list anywhere. Now the VA / Goverment has everything listed that one could ever come up with but not to have PLS as a code tells me that is where it belongs under 8017 as stated by Johns Hopkins the rarest form of ALS. It pains me to even make a comparison between the two as a person that may very well have ALS I do not want to even think of it, however for those vets that have PLS I am taking the position that by ommission it is by inclusion that it is the same as 8017. I have read every release on the ALS presumtive and find noting but time in servies to establish service connection. One Lady aske what happend to the registry. They no long need it as everybody is now included. I have sent a letter to both of my neuroligist showing them the web page from Johns Hopkins saying that PLS is the rarest form of ALS and asking them for letters of support of this position.
8017 Amyotrophic lateral sclerosis:
Minimum rating 30
This is the only place I could find in the whole schdule regarding PLS, If someone finds it somewhere else please pass it on.
Dave

[Zaphoon]

Dave,

I'm a vet that shares a diagnosis of PLS. It was an opinion that was seconded by a V.A. neurologist. I am going to be following up with a V.A. social case worker that made the initial contact with me a few weeks back. She suggested I file for service connection.

We'll see what happens.

Kim

[piperl4]

Kim, Please keep us informed of your progress I talked to the DAV today and they said try and get Johns Hopkins and my neuroligist to identify the fact that PLS is in fact a rare form of ALS. In light of that following the suggestions of another post we discused the fact that it could also be called UMN- Dominant ALS. Also the fact that PLS does not exist in the VA diagnostic codes is very interesting as they will either have to create one or place you into 8017. that will be interesting if you are puttin in with streight PLS and no variation. Beleive me a lot of people will be watching your case progress. Good luck
Dave

[piperl4]

Originally Posted by bpayton

I got my denial letter in Feb. It didn't mention the new ALS ruling just that my medical records showed nothing to service connect it. I talked to my VSO about filing appeal and he said he wanted to do a reconsideration first. He took my print out from John Hopkins saying PLS is the rarest form of ALS highlighted it and sent it to VA. I got a letter from VA saying they had reopened my claim and were reviewing it. I still think they will deny it and it will have to go to BVA and this is where I think PLS has a chance of being added.
Billy

BPayton, When talking to the DAV today he said that the ALS cases were being pushed right to the top of the pile as they were almost a default ruling now. The PLS factor will be the test. I hope you have great success with your claim. It will sure help a lot of others who ever wins first. If you lose then we know we have to turn to the relationship of PLS to ALS and try to educate ourselvelves as much as possible on the subject. I also told them that there was no such thing in the diagnostic codes about PLS and he was shocked at that and said that would mean to him that PLS is under ALS also. Good luck
Dave

[piperl4]

Originally Posted by Walter

PLS is such a rare disease. There are only a few number of individuals afflicted with PLS and even smaller small number of veterans.

Possibly because we are small in number and don’t have large organizations, famous or prominent people like military generals advocating for us, we may have been ignored or just overlooked by the VA as far as the presumptive directive is concerned. (Who knows?)

So, I wrote a directly to Secretary Peake.

I pointed out since PLS is a specific form of ALS and many authorities consider PLS to be a sub-category or a rare type of ALS.

I asked him to acknowledge that PLS is a particular type of ALS and to please categorized PLS as a presumptive illness along with the classical form of ALS.

I attached several quotes from those authorities.
Such as: The Johns Hopkins Medicine Neurology and Neurosurgery website
“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.”

Here is Secretary Peake’s address in case anyone wants to write. I figure it couldn’t hurt.


To: The Honorable James B. Peake M.D.
Secretary of Veterans Affairs
810 Vermont Avenue NW
Washington, DC 20420

The one thing that I really would like to know is based on the diagnostic codes the VA uses only ALS is listed as far as I have found. I would ask the question is you have every other condition known to mankind but PLS so by exclusion of it to me means you have included it into 8107 or whatever it was for ALS. Do anyone else find PLS in the diagnostic codes.
Dave

[piperl4]

To: The Honorable James B. Peake M.D.
Secretary of Veterans Affairs
810 Vermont Avenue NW
Washington, DC 20420


From David O Henderson



Dear Sir:

I cannot get and answer to a very pressing question in 38 CFR Part 4 4.124a listing Neurological Conditions and Convulsive Disorders the only list for any lateral sclerosis is 8017. I am currently diagnosed by Johns Hopkins with UMD-Dominant ALS, or some people refer to it as PLS. Now the schedule has every possible condition known to man listed in the schedule where would you list PLS or UMD-Dominant ALS. My believe is by exclusion of PLS of any form for which even Johns Hopkins says is a Rare form of ALS is not listed as when the schedule was developed PLS was enjoined with 8107.

There are a lot of us Veterans that served in Viet Nam especially and exposed to Agent Orange that now have the variant of ALS called PLS and at any time could change as they are both in fact motor neuron diseases.

I am sure that a secretary will read this letter however I hope that you can extend the courtesy of an answer to the question as not one single person in the VA will even try to answer it. There seems to be no application of common sense or reason to just not look at the problem and it will go away with us, or they will die before we have to make a decision.

Believe me the past years have been the most painful of my life with over 6 operations to date and more coming. I am already at 70% so it is not about the money but about what is right and what is wrong.

I respectfully as that someone in the VA just answer the 2 questions. First where is PLS or UMN-Dominant ALS listed in the rating schedule. Second if they are not listed where do you then plan to place us. As mine started while on Active duty it will be interesting what rating schedule they use.

Respectfully


David O Henderson

Here is a letter I wrote wonder if they will respond

[ZenArcher]

A few things and I'm not trying to argue or criticize but help. First Peake left the office in January it is now Eric Shinseki. Second I'm almost willing to bet that if/when they respond it will say something along the lines of a disease need not be listed to be connected or rated.

38CFR4.120: Evaluation by comparison
Disability in this field is ordinarily to be rated in proportion to the impairment of motor, sensory or mental function. Consider especially psychotic manifestations, complete or partial loss of use of one or more extremities, speech disturbances, impairment of vision, disturbances of gait, tremors, visceral manifestations, injury to the skull, etc. In rating disability from the conditions in the preceding sentence refer to the appropriate schedule. In rating peripheral nerve injuries and their residuals, attention should be given to the site and character of the injury, the relative impairment in motor function, trophic changes, or sensory disturbances.

I believe the best bet for getting service connected is convincing congress and/or the VA that PLS is UMN dominant - ALS or getting that as your diagnosis. Ask for a diagnosis of ALS - UMN dominant and see if the docs will do it. Get letters from every expert you can saying the PLS is a form of ALS and submit that with your paperwork. Write your legislators submitting those same letters and ask why you're being excluded.

[piperl4]

Originally Posted by ZenArcher

A few things and I'm not trying to argue or criticize but help. First Peake left the office in January it is now Eric Shinseki. Second I'm almost willing to bet that if/when they respond it will say something along the lines of a disease need not be listed to be connected or rated.


I believe the best bet for getting service connected is convincing congress and/or the VA that PLS is UMN dominant - ALS or getting that as your diagnosis. Ask for a diagnosis of ALS - UMN dominant and see if the docs will do it. Get letters from every expert you can saying the PLS is a form of ALS and submit that with your paperwork. Write your legislators submitting those same letters and ask why you're being excluded.

Advice well taken, I just solved my problem tonight after returning from the Doctors, after the final test were in and he finished the exam he put down a diagnoses of ALS with no caviots. Guess that is not the best news for me but guess that settles the PLS issue pretty much. He has confered with Hopkins and my other neuroligist and they all concured. They have now settled on a supportive care system now not a diagnoses based care. I guess the next few years will be a lesson in humility. I only pray some good will come out of all of this. One sad note is I heard one Vet that had Blue Cross through his Wife that they came after him saying that now the VA will treat you we are stopping. I guess the nasty side of all this is beginning to show. That is another issue they should have resolved before making the ruling.
Dave

[ZenArcher]

Sorry you got the diagnosis. The first thing you need to do now is contact the PVA. They have worked closely with ALSA and have the best track record for getting PALS connected quickly and correctly.

Just because the VA will treat you doesn't mean you can't go elsewhere. I go to the ALSA ALS clinic in Hershey but get all my equipment and meds through VA. I've been connected for over a year now and my only complaint thus far was the length of time it took to get my SAH grant approved and construction started. Beyond that the VA in terms of health care and compensation have been exemplary.