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Monomelic Amyotrophy


DonH

Question

ALS Variant?

 

I'm a Vet Wife. I post on behalf of my husband, I'm his note taker at doctor's appointments and consults.  I'm his support system and all around cheerleader. Lord knows we have had our VA battles. All these years after Vietnam, the onset of my husband's emerging illnesses, obviously percolating internally has emerged  one after another. We've seen subtle signs and some not so subtle. But didn't; know what those sign meant. The VA didn't do a very good job of educating the older veterans about what to be aware of regarding SC disabilities,

My veteran husband's a Purple Heart Vietnam Veteran  served in US Marine Corps. My husband  has several service connected disabilities. My husband diagnosed with Monomelic Amyotrophy recently; it is a Motor neuron (MND) disease that is the umbrella covering all type Motor neuron diseases and variants. To which ALS/ Amyotrophic Lateral Sclerosis and variants falling under the same umbrella as being classified as Motor Neuron Disease (MND). As exhibited in cases of muscle loss: Monomelic Atrophy.

ALS causes degeneration of nerve cells in the brain and spinal cord that leads to muscle weakness, muscle atrophy, and spontaneous muscle activity. The VA Doctors pondered whether my husband had ALS or MS. Yet, the Neuromuscular Head Physician conceded that my husband's illnesses was an ALS variant because his illness fell under the umbrella of Motor Neuron Diseases as did ALS......is a Motor Neuron disease. ???? We don't know how VA will decide.

Other complicating issues:

*Spinal issue (S Curve of spine)

*Multi focal motor neuropathy associate with Diabetes 2 is a part of the mix/entwined as well. 

 

However, most severely is the inability of identifying the exact reason for the monomelic atrophy.

Although it was hoped a more exact finding will be determined when all results of updated blood tests were in.

On May 2017: *Blood test are in; determination that no immune diseases are present

Possible treatment of an intravenous treatment once every three months or medications with steroids would be beneficial. No effective treatment available.

 

MMA

Diagnosis. 

Inflammatory Arthritis is Part of the neuropathy (Special kind of neuropathy)

As well as severe spine problems. Very rare complicated illnesses intersecting and exacerbating primary and/or secondary with veteran's service connected disabilities.

 

Monomeric atrophy......Veteran has lost the use of his right hand and right forearm weakened and wasting away.

One limb atrophy

See notes…..described as one limb muscle atrophy

 

Spinal cord (S curve of spinal cord) compression on top on addition the monomeric

 

Toxic agent like Agent Orange could more likely than not" a contributor for neuropathy.

 

Immune diseases (no)

 

Deterioration. Of bones on vertebra

Spondylosis...inflammatory arthritis 

Acts like spinal cord injury 

 

(Findings of EMG) EMG to confirm the diagnosis ( Neuromuscular VA Physician at Michael E. DeBakey VA Medical Center, Houston, Texas)

Table of Rated Disabilities

Disability

Rating

Decision

Related To

Peripheral Neuropathy, Left Lower Extremity

 

Not Service Connected

Denied as…. early as 2011… Yet, D to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued.

Peripheral Neuropathy, Right Lower Extremity

 

Not Service Connected

Denied as…. early as 2011…  Yet, ID to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued

Agent Orange - Vietnam

Neuropathy, Left Upper Extremity

 

Not Service Connected

Denied as…. early as 2011…  Yet, ID to pinpoint as severe symptomatic complexities of Monomelic Amyotrophy variant of ALS in 2017….should be cued

Bilateral Hearing Loss (claimed as diminished hearing)

0%

Service Connected

 

Tinnitus (claimed as ringing in both ears)

10%

Service Connected

 

headaches

 

Not Service Connected

 

depression

 

Not Service Connected

 

skeletal arthritis aching of the joints (unspecified)

 

Not Service Connected

Arthritis denied as…. early as 2015…  Yet, ID to pinpoint as being symptomatic complexity of Monomelic Amyotrophy variant of ALS in 2017….should be cued

post traumatic stress disorder (PTSD, also claimed as depression and anxiety)

30%

Service Connected

PTSD - Combat

Hypertension

0%

Service Connected

 

Neuropathy, Right Upper Extremity

 

 

Rectal carcinoma claimed as rectal cancer, a soft tissue cancer)

 

Not Service Connected

Agent Orange - Vietnam

Still on since  12/11/14 appeal

Remand 5/15

scar, shrapnel right knee

10%

Service Connected

 

09/18/2013

diabetes mellitus type II

10%

Service Connected

Agent Orange - Vietnam

07/06/2015

prostate cancer

100%

Service Connected

Agent Orange - Vietnam

07/06/2015

erectile dysfunction

0%

Service Connected

 

07/06/2015

 

Neuropathy, Right Upper Extremity Denied as…. early as 2011…  Yet.ID to pinpoint as severe symptomatic complexities of MonomelicAmyotrophy variant of ALS in 2017….should be cued Agent Orange – Vietnam

 

Edited by DonH
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Also the age of the helpless child is a factor in their denial.The disability is stated in the remand we got today here- An IME/IMO doctor would have to have all medical records for this claim specifically those from the earliest diagnosis and treatment records.

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Thank You!

If Hubby desires to keep pushing we will follow up with Representative. However, he is thoroughly worn out....and is rather discouraged about the long battles with VA. Since he's won some hard fought battles, he may decide to let all other sleeping dogs lie. If it were completely up to me,  I would be like you Berta.  I wouldn't allow any stone to remain unturned. Yet, Hubby's the one who has to call the shots about continuing or letting it be.

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When I finally figured out  the 2 remands, I realized as well- that Janesville is where  subsequent evidence,;like the IMO should have been sent.I was confused by those older dates of past RO decisions.

https://www.benefits.va.gov/compensation/mailingaddresses.asp

I also wanted to say that the IMO might be in your husband's C file.

That is where I found all of the stuff the VA had received from me, but had ignored.

It was  the most critical and probative evidence I had sent to them.

When I gave testimony to the Sub Committee, House VAC, I put in the testimony letter,  copies in color of 53 USPS Priority tracking slips of what I had sent to the RO, to prove they had my evidence but withheld it from a C & P examiner, as well as the OGC.

Only by being aggressive did I manage to get the evidence they withheld from OGC, to the OGC and that is when they settled with me. They did this to the Regional Counsel as well- He wanted to settle with me within a few months after getting the SF 95.I already  have griped about what they did then with a critical Peer Review report- that supported all f my malpractices charges. So the FTCA took a few years and tyet could have been resolved in a few months.

I used the Peer Review report I found in my C file ( VA told me it had never existed) and I used it as evidence for my AO IHD claim.

Not only were my husband's medical records a template for proving a prime facie case of malpractice, the C file also contained for me Multiple surprises.

Without these records ( C file, and VA med recs, )and without SMRs and 201 files, 

a claimant might never succeed.

 

 

 

 

 

 

 

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I'm thinking that is a possibility that perhaps some information that is being ignored due to purposefulness.... My husband began in the mid 1990's on some of his illnesses PTSD intertwined with heavy drinking,. It  frightened the be Jeepers out of  him when they told him he would have to endure a recreated Vietnam Experience  as a  setting to evaluate him ( I understand they no longer do this anymore. To avoid being put through this, he didn't go back to the VA for awhile..... Around the early 2000's he filed again on PTSD.....[again ignored. Somewhere around the early  to mid  1990's  prior to 18 from days of a child of 8 or 9 (Bipolar, Schizophrenia   or the combination of the two  is difficult to pinpoint identify in young children because looking back, there were signs we just didn't know what it was called. Illnesses like Bipolar and Schizophrenia  exhibits  different from adults) It was mentioned  at some earlier point to VA; It was ignored. .It is typically  the teenaged  years that heighten over the years to full blown mental health issues  not occurring in younger children as recognizable to identify  

Then at the encouragement of my late father (military retired and disabled veteran), my husband went to  VA  2011 due to extreme weight loss; falling down; heavy drinking,   I was still working at the time . I ended up leaving my job mid way through 2011/ I wouldn't know what to expect when I got home,. Quite a few times, I'd find him on the floor where had fallen. he retired early because he had become so combative; he was not getting alone with folks on the job due to  too many bosses and not enough  workers.  Emerging unsafe working conditions aggravated his anxieties ----- During the prior years of working he had worked in a control environment with just a few people  with a commitment to safety. As years went by the company's  changing ownership and  the practice began assigning  more people to work on a shift; then ownership changed for the company and the company began cutting corners and taking unsafe risk. My husband began being caught too many times in precarious situations reminding him too much of Vietnam whereby the Grace of God, was his saving grace. The final straw occurred  while he stood on top of a large piece of equipment whereby unsafe conditions existed  for an explosion' at any moment! That was the day he put in paperwork to retire. 

Additionally, my husband was treated shabbily by VA because he had a coexisting  alcohol problem. VA was always low balling his PTSD and  denying his Neuropathy claims because VA  made  scoffing snide put-down comments  and cited alcohol related in lieu of an aggravation being  triggered by PTSD. 

I'm thinking  as you surmised, there is a possibility that perhaps some information that is being ignored purposefully.

 

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On 7/26/2020 at 7:54 PM, DonH said:

I'm thinking that is a possibility that perhaps some information that is being ignored due to purposefulness.... My husband began in the mid 1990's on some of his illnesses PTSD intertwined with heavy drinking,. It  frightened the be Jeepers out of  him when they told him he would have to endure a recreated Vietnam Experience  as a  setting to evaluate him ( I understand they no longer do this anymore. Tp avoid being put through this, he didn't go back to the VA for awhile..... Around the early 2000's he filed again on PTSD.....[again ignored. Somewhere around the early  to mid  1990's  prior to 18 from days of a child of 8 or 9 (Bipolar, Schizophrenia   or the combination of the two  is difficult to pinpoint identify in young children because looking back, there were signs we just didn't know what it was called. Illnesses like Bipolar and Schizophrenia  exhibits  different from adults) It was mentioned  at some earlier point to VA; It was ignored. .It is typically  the teenaged  years that heighten over the years to full blown mental health issues  not occurring in younger children as recognizable to identify  

Then at the encouragement of my late father (military retired and disabled veteran), my husband went to  VA  2011 due to extreme weight loss; falling down; heavy drinking,   I was still working at the time . I ended up leaving my job mid way through 2011/ I wouldn't know what to expect when I got home,. Quite a few times, I'd find him on the floor where had fallen. he retired early because he had become so combative ; he was not getting alone with folks on the job due to  too many bosses and not enough  workers.  Emerging unsafe working conditions aggravated his anxieties ----- During the prior years of working he had worked in a control environment with just a few people  with a commitment to safety. As years went by the company's  changing ownership and  the practice began assigning  more people to work on a shift; then ownership changed for the company and the company began cutting corners and taking unsafe risk. My husband began being caught  too many times in precarious situations  reminding him too much  of Vietnam whereby the Grace of God, was his saving grace. The final straw occurred  while he stood on top of a large piece of equipment whereby unsafe conditions existed  for an explosion' at any moment! That was the day he put in paperwork to retire. 

Additionally, my husband was treated shabbily by VA because he had a coexisting  alcohol problem. VA was always low balling his PTSD and  denying his Neuropathy claims because VA  made  scoffing snide put-down comments  and cited alcohol related in lieu of an aggravation being  triggered by PTSD. 

I'm thinking  as you surmised, there is a possibility that perhaps some information that is being ignored purposefully.

 

DonH,

This sound like the place for an extra-schedular claim.  Complicated and long standing.  The ROs and DROs and denying because they can and are pressured to do so.  Your husband needs to get them under the thumb of the Executive Director, Compensation Services, Beth Murphy.  I had an extra-schedular claim that lay ignored from 1987 to 2017.  It was ignored until a BVA Judge remanded it.  Then I had a DRO that actually went through the file, without any errors or omissions, in his report to the Executive Director.  I was awarded back pay to September 16, 1985.

I think more than just the colon cancer are related to Agent Orange.  He won't get a fair shake unless he rocks the boat a little.  If he wants to take it slower, rather than appeal to the Court, the extra-schedular claim which has no time limits is the way to go.  I was a Corpsman in Vietnam from October 1965 to October 1967 through two Agent Orange operations, Prairie I and Prairie II.  No Purple Heart so no primary battle incident for PTSD.  If your husband would like to connect, I'd be happy to help you talk him through this.  My email address is lembray@gmail.com .  The Executive Director does not need a CUE to correct.  Only what she finds as an error.

Your husband needs to think of you also.  Even TDIU gets you health care and survivor benefits no matter what his cause of death is.  He did his time in the place and is due correct compensation like any other person damaged in employment.  He shouldn't let his PTSD hold him back from being compensated for the AO residuals from probably being sprayed with it in the field.  I've met few Marines that weren't soaked and unable to flush off and change clothes the way I was when I spilled some from a barrel on me and jumped in the Cua Viet River.

I would just simply ask for extra-schedular Agent Orange and PTSD.  My son's stepfather was ALS SC from AO.  He is deceased now but was 100%. 

 

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