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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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I am sorry I have more questions here- the same ones the Agent should have asked you----

Did the VA make a statement as to how they considered SMC (Special Monthly Compensation) in their 100% decision?

Was that a 100% Permanent and Total decision?

Does your husband receive SSDI solely for the SC conditions?

I got a friend 100% P & T with SMC under 1151 for surgery that required a colonostomy bag.

The local VA was treating him for hemorrhoids. He was sent to a different VAMC and found out he had rectal cancer. I didnt have his medical records when I prepared the claim for him.

I just stated that the VA medical records, in their entirety would reveal the malpractice, specifically those generated with his recent hospitalization at Buffalo NY VAMC  It is one way to begin a Section 1151 claim, when a claimant fully believes the VA gave them inadequate care. but they do not have a copy of the medical records yet.

In this case, the VA made a fairly fast decision.All they really needed to look at were the reason he had been sent to the other VAMC , ( bleeding from chronic hemmoroids) and the discharge certificate from Buffalo VAMC.....surgery for colon cancer.  I am sure they poured over the whole med rec stack ,though, to try to find a way out of the claim and they failed.

 

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I spoke with the Agent last week.....in summary of overall claims presently and previously. I mentioned BVA Appeal due to the Agent having specified at a prior point that the BVA Appeal/Remand are age sensitive upon the approach of a 75th birthday. My husband turns 75 on July 19. Accorded E-Benefits, the BVA Appeal case was remanded May 2015 to the Regional Office or to the Management Center (vague language not exactly specifying which). On the Hadit Podcast, I heard John Dorley state Houston Regional Office is 5 years behind with appeals and remands. Although remands should be prioritized....,but, it's not happening.

Our Agent has done well. Yet because my husband is, now, 100%.....seemingly, there appears to be no necessitated urgency. That's why recently I sent

(a) documentation outlining the new diagnosis:

Monomelic Amyotrophy

(b) On one hand Noting successes already accomplished. Only the other hand reminding about issues needing to be revisited....that were previously denied....

(c) the BVA Appeal....

and (d) the 1151 and/or FTCA claim...

(e) I did also mention the possibility of needing an IMO because in reading over BVA cases, the cases winning most often were those having an IMO. For instance the colorectal/rectal cancer cases when veterans or veterans' widows challenge that it is a presumptive soft tissue resultant of AO Exposure; or is direct resultant of AO Exposure; or because it was equipoised to some other presumptive AO cancer suffered by the Veteran. I've read BVA decisions granting the claim. However, I've read BVA decisions denied with the same set of circumstances of those granted. The difference hinged on the IMO....the cases granted affirmatively were those having IMO's. It doesn't seem fair, but obviously the IMO makes the difference. I expressed my observations in reading I've BVA cases. 

Waiting to hear back from the Agent 

p.s. I heard AskNod on the Hadit podcast mention the inconsistency of BVA decisions so I know, now, some cases won and some cases lost on the same body of circumstances is true and not my imagination.

Edited by DonH
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That is true but, as a BVA claimant myself, I know the BVA does not always mention all of the critical evidence that prompted their grants of awards. We get basically a summary ,even though some are very long summaries.

BVA cases are not  accepted as evidence to support a similar case. I used a BVA decision I got , (a moot issue because I won at the level and never withdrew the appeal) however, as

evidence to prove a subsequent BVA case I won. It contained a legal statement as to my subsequent claim.

My VARO cant read. The OGC explained it to them.Then they sent me the cash.

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Thanks for all this great insight of information.

"I am sorry I have more questions here- the same ones the Agent should have asked you----Did the VA make a statement as to how they considered SMC (Special Monthly Compensation) in their 100% decision?"

The only SMC my husband gets is the SMC for his erectile  dysfunction under the VA.

"Was that a 100% Permanent and Total decision?"

It was just 100%....there were no other specifics.

"Does your husband receive SSDI solely for the SC conditions?"

No, I don't think so. Since my husband was already at SS age to be receiving SS for having reached SS age... No other type SS was ever mentioned. So is SSDI also available to him? That point has never been mentioned.  I don't think he receives any compensation solely for the SC conditions under SSDI.

"I got a friend 100% P & T with SMC under 1151 for surgery that required a colonostomy bag."

Was your friend not diagnosed with rectal cancer and it was found? Or were they suppose to operate on his hemorrhages and mistakenly operated on his rectum resultant in him having to wear a colonoscopy bag?

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If your husband gets SSA retirement benefits, he would not be able to receive SSDI.

"Was your friend not diagnosed with rectal cancer and it was found? Or were they suppose to operate on his hemorrhages and mistakenly operated on his rectum resultant in him having to wear a colonoscopy bag?"

The VA did not diagnose him with rectal cancer for years.They were treating him solely for hemorrhoids, and a painful SC scar and schrapnel due to a GSW ( he had 2 PHs) and a leg injury,caused at the VA,  that aggravated the leg GSW. (Gun Shot Wound) Since the hemorrhoid situation was getting worse, they sent him to a different VAMC to somehow treat the hehemorrhoids, but instead that hospital found that he had cancer and they had to remove most of his colon and give him a colonostomy bag.

I searched dozens of  BVA decision remands for  the May 2015 date but could not find your remand.

If we have the Docket # maybe we can help more.

 

 

 

 

 

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No, my husband is just on regular Social Security received upon the age of 65. He doesn't receive any other type Social Security.

Hmmm...so, the fact that your friend's rectal cancer had advanced to the colon is the reason he ended up with the having to wear a colonoscopy bag?

We once had a doctor say to us that the need for my husband having to wear a colonoscopy bag was due to the VA doctors having accidentally punctured my husband's colon.

I'm out of town and will

be back in town tomorrow. I will look through my husband's documents to locate the number of his BVA case. 

 

 

Edited by DonH
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