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art1959

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PALS
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lecanto
I have PVA as my rep and they also want a DBQ to file claim even though my VA medical records under active problems they have ALS and the VA Doctors from Nuerology and Pulminary refused to sign one. I have been to a Neuro outside VA and they even refused as well as just agreed with VA. My spirometery breathing test showed my muscles for breathing are weaker than test done in 2014 which was normal. I use a machine for sleep apnea, one for lung and cough assist and another for excess saliva which I use a lot less than others. just got done with another EMG which showed slight change with atrophy and denervation. I talked with PVA and they said if we file they the VA will send me to a comp and pen exam and I know if they did I would end up going to Gainsville Fl which I hate cause they are corrupt. The last neuro exam I had there said he knew the BVA and they were not going to grant my claim and he saw it the same way. I ended up losing 10% because of him on my back condition. I'm afraid to go anywhere outside the VA cause I believe they have control over outside Doctors and its hard to get anyone to do a DBQ. I'm going to wait and see what the VA Neuro puts in her notes and the next breathing test notes before I decide what to do. I would appreciate any ideas from anyone and also I have contacted other outside ALS clinics and it may take time to get in. God bless to everyone and to my brother and sister vets thank you for your service. 16 years Army for me. :smile:
 

gooseberry

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I am sorry but I dont know where Lecanto is in Florida. My husband was treated at James Haley. They have a great staff that work with you to maximize your benefits. It might be worth it to try at Haley.
 

Atsugi

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I worked for VA for three years. It is run by the law. There is no law saying you need a DBQ. Perhaps a DBQ is easier for the C&P evaluator (especially since the C&P guy is not a doctor).

As soon as a doctor, VA or non-VA, diagnoses you with ALS, that is all that is required to establish a Date of Claim.

The CBOC in Lecanto is aligned under the North Florida/South Georgia VA and the VA hospital that serves Lecanto is Gainesville. I know nothing of Gainesville VA. If you want to go to Tampa, you could ask. You are right on the border of the Tampa VA area, so you could request the Director at Gainesville allow you to get care at Tampa.

Tampa's VA hospital took excellent care of us--and we are from Orlando! The first time we had a visit at Orlando, we were very patient and nice, but after a few minutes, we mentioned that Orlando has no experience with ALS and Tampa would be more appropriate. They agreed easily.

James Haley (Tampa) was great. They had all the experts and equipment, and each time we visited, they paid for an overnight at a local hotel they have on permanent contract, and they loaded us up with stuff we didn't know we needed. Very good attitude there.

The only reason nobody wants to fill out a DBQ is because it takes an hour to fill out, and doctors get paid very little for that hour. Plus, they went to med school to do doctoring, not paperwork.

Non-VA doctors are not controlled by the VA. But you can't just see a non-VA doc and expect VA to pay for it. VA will always insist you use VA docs if they have the required skill on site within a reasonable timeframe. If your VA doctor agrees that you should see a non-VA doctor, then that VA doc can put a request in the system to the Fee Basis/Managed Care unit to give you an authorization to see the non-VA doc at VA expense.
 

gooseberry

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After every visit with significant changes, we contacted pva and they got it filled out for us.

In the private sector, I filledmout as much as I could for the doctor, the Nurse practioner would then include the latest info from the last visits. This system worked for us but remember to double check the info the clinicians provide.
 

art1959

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lecanto
Thank you Atsugi and Gooseberry for your comments and I do use James Haley in Tampa. The Doctors there are good but also The OVA has tried to get the Doctor who runs the ALS clinic there and respiratory Doctor to do DBQ but they refused. I use to go to Gainsville and Lecanto VA but transfer to Brooksville and Tampa back in 2012 because I was not happy with the treatment I received . When you both went to Tampa VA they may of had different Doctors running the ALS clinic. I guess having a DBQ makes a claim easier to approve cause them they wont send you to C&P clinic. When I check my VA medical records and look at the list of medical conditions or VA active problems they have 20 different medical conditions and one at the top of the list is Amyotrophic lateral sclerosis (SCT 86044005) . I know what ALS is but SCT and numbers I have no clue. Then it has active under status and by comments it has- Autopap-7-15cmH20 Medium Full Face. Time and date entered/ 09 Dec [email protected] I don't know if this is enough to file a claim for ALS but before this the Neurologist had me having PLS dominant ALS then changed it on Dec 9th. The biggest problem is if the VA decides to deny claim because they feel from Doctors note where some say ALS but another says PLS is conflictive that they would send me to Gainsville C&P and most of the time they go by the C&P examiner notes. I have requested Tampa C&P but every time they the VA in St Pete send me a letter saying they had to send me to Gainsville because of scheduling issues. Good example is, my treating Physcologist MD did 2 DBQ's for PTSD and the VA in St Pete decided to send me to C&P in Gainsville and the Doctor there was not a MD like my treating one but was 40 minutes late for my appointment and saw me for just under 10 minutes and did a 67 page evaluation and called me a malinger even though VA verified stressers from service. I have a lot of respect for Tampa VA Doctors and really enjoy being treated there but when it comes to claims I have my doubts about VA honesty since it took me six years waiting for a DRO hearing . I will check with PVA to see if having ALS as a VA active medical problem is enough to be granted service connection. Thanks again for your comments and God bless you all.
 

Atsugi

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Art, at some point a doctor said to you personally, face-to-face, "I'm sorry to tell you this, but you have ALS." On that date, he would have written an extensive note into your record. The piece of paper is all you need. (Actually, VA uses a computer, so you'll have to print that out.

All ALS is automatically service-connected without question, unless you have told them that it runs in your family. ALS is a "presumptive" illness, meaning VA presumes it is SC. The approval is 100% SC and it is expedited.

Do you have ALS or PLS? Very big dif.
 

gooseberry

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I would set up an ebenefits account so you can access your health records. Use the blue button download. It is the easiest way to see all things medical.

We saw Dr. Elamin. He is a pulmonologist.We were able to email him and he responded within 24 hrs. Dr. Catherine Wilson is a psychologist there and is very helpful. Dr. Rozas runs the service but we never saw her. Ilene page was the cnrp who provided all neuro services. If you havent had your yearly assessment at Haley, I would ask for it. Disability ratings almost always change afterward and it is a very comprehensive evaluation.

You have to go thru your pcp and yearly physical to request it or be referred.
 

art1959

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Gooseberry, I am also seeing Dr. Elamin who in his note also put sleep apnea and Dx of ALS. Dr. Rozas is the one I have been seeing and this year will be her 10th year in practice after receiving her Doctorates degree in 2007 from university central del Caribe school of medicine. She is a Neurologist and Psychiatrist. I have breathing test again on the 1st of Feb Wednesday this week and will see Dr. Elamin as to the results from test done in Dec last year. He is the one that ordered the sleep machine for sleep apnea and the cough assist lung machine as well as the saliva machine. Dr. Roza uses interns to do the EMG testing even though she is present. Last Wednesday I saw her again for another EMG and she said the result showed slight denervation and atrophy but mostly the same as first test. I felt like a test dummy for 2 hours while the intern was being corrected as to where to put the needle for the muscle testing and nerve testing. I also saw Dr. Catherine Wilson who tried to help by taking me over to PVA and also talked with the Doctors but they still refused to do DBQ for ALS . I have been checking myhealthyvet for notes from testing and that's how I get copies of Doctor notes. who is Ilene CNRP who provided your neuro services. Is that person the one who did your DBQ for ALS. I know as said before that under VA PROBLEMS LIST the very first medical condition listed is Amyotrophic lateral sclerosis (SCT 86044005) Provider Dr. Rosas Julie A location Tampa FL VAMC comments Autopap-7-15cmH20 Medium Full face Date/time Entered: 09 Dec 2016 @ 1200. I'm not sure if this alone is enough for disability but waiting to get copy of last note from the testing EMG last week and then I can see if Dr. Rosas changed anything like she doe's every time I see her. its like she is always trying to put it on something else other than ALS regardless of results. The first time I saw her after the first EMG she said its not service connectable. I am almost positive if you saw her she would do the same but I wonder if going on 10 years of practice this year really qualify you as a expert on ALS. I respect her position and title as well as her field. I really don't know what to do next but I also know that PVA wants a DBQ to file a claim even though they already field intent to file. There concern is that since some Doctors are saying ALS like Dr. Elamin and my VA Podiatrist then you have Dr. Rosas and ENT Doctors going by her notes saying different that the VA in St Pete would send me for a C&P in Gainsville and deny me because of conflicting notes even though Dr.Rosas put ALS at the top of my medical problem list. Now as far as the yearly Physical your talking about, well it last maybe 15 minutes with my PCP checking my heart beat. They never send me to Tampa for one. Well anyway God bless and thank you for your response.
 

Atsugi

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A medical doctor is not qualified to determine if a disease is SC. The raters do that in St Pete.

ALS is always automatically SC, unless it is known that you have FALS within the family.

Doctors know medical stuff. They don't know the law. The law says the VA has a "duty to assist." If you can't get anyone to fill out the DBQ, go see the hospital director and he/she will ensure that somehow assists you with your claim properly.
 

gooseberry

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I would contact Todd Jones at the regional pva office in St. Pete. He will make it happen.
 
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