Monomelic Amyotrophy

[DonH]

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 June 26, 2017 by DonH
adding more details

[Berta]

Is this your remand ?:

https://www.va.gov/vetapp15/files2/1518640.txt

What has the Representative done as to the Helpless Child application?

And what have they done to get the IMO from Dr. Bash into the record?

I notice this long thread had questions from me ,that were unanswered.

I get that. This stuff can be overwhelming- 

Can you scan and attach the last letter your husband received from the VARO?

Cover your C file #, name, address, prior to scanning it.

Or was the last letter from the BVA, if that above is the remand.

 

 

 

[Berta]

I know I again asked Many questions- this is the one I am most concerned about:

"Our Representative says we have 2 years to still challenge BVA's error. "

What error would that be?

Did the Representative send the IMO/IME from Dr. Bash,  directly to the BVA?

It sounds to me like maybe  it went to the RO, but if the BVA had docketed the case already, the BVA had jurisdiction over it- not the RO.

Did you send the VA a copy of the IMO or did the Representative do that?

Did the VA ever acknowledge receiving it?

 

 

[Berta]

I asked a stupid question - of course you have heard from the VARO by now- due to the Remand.

Can you Scan and attach their decision and the evidenc list they used. Cover your husband's C file # ,name , address prior to scanning it.

Has the VA done anything the remand called for?

I have just posted some of it here- if this in fact is the actual remand :

In Part:

"Rectal Carcinoma The Veteran maintains that he developed this disorder as a result of exposure to Agent Orange while in service. The Veteran had a period of service in the Republic of Vietnam during the Vietnam Era, and therefore his exposure to Agent Orange is presumed. The Veteran has also been diagnosed with stage II rectal cancer and has undergone a colostomy, but does not have a diagnosed disorder that is recognized under 38 C.F.R. § 3.309(e) as a disease for which presumptive service connection is available on the basis of herbicide exposure. Nonetheless, the Veteran may establish service connection based on exposure to Agent Orange with proof of actual direct causation. Combee v. Brown, 34 F.3d 1039 (Fed. Cir. 1994). The Veteran has not been afforded a VA examination regarding the etiology of his rectal cancer disorder. He maintains that rectal sarcoma is a form of "soft tissue sarcoma" and thus should be service-connected on a presumptive basis. See October 2012 notice of disagreement. The Board recognizes that certain soft tissue sarcomas are presumed to be service-connected for veterans who were exposed to Agent Orange. See 38 C.F.R. § 3.309(a). Note 1 in this section indicates that the term "soft-tissue sarcoma" includes the following: adult fibrosarcoma; dermatofibrosarcoma protuberans; malignant fibrous histiocytoma; liposarcoma; leiomyosarcoma; epithelioid leiomyosarcoma (malignant leiomyoblastoma); rhabdomyosarcoma; ectomesenchymoma; angiosarcoma (hemangiosarcoma and lymphangiosarcoma); proliferating (systemic) angioendotheliomatosis; malignant glomus tumor; malignant hemangiopericytoma; synovial sarcoma (malignant synovioma); malignant giant cell tumor of tendon sheath; malignant schwannoma, including malignant schwannoma with rhabdomyoblastic differentiation (malignant Triton tumor), glandular and epithelioid malignant schwannomas; malignant mesenchymoma; malignant granular cell tumor; alveolar soft part sarcoma; epithelioid sarcoma; clear cell sarcoma of tendons and aponeuroses; extraskeletal Ewing's sarcoma; congenital and infantile fibrosarcoma; and malignant ganglioneuroma. See 38 C.F.R. § 3.309(e). The Veteran essentially contends that because Note 1 does not expressly state that it is an exclusive list of the cancers known as soft tissue sarcomas, there may be other eligible soft tissue sarcomas, such as rectal carcinoma. To support this theory, the Veteran stated that he had reviewed "cancer research studies." See Veteran's October 2012 notice of disagreement. Accordingly, the Board finds that the Veteran should be afforded a VA examination to assist in determining whether his currently diagnosed rectal carcinoma is related to service, to include herbicide exposure. Helpless Child Claim The Veteran is seeking additional dependent benefits for his adult son, O.L.H., on the basis that he is a helpless child permanently incapable of self-support. He was born in 1975 and turned 18 years old in 1993. The Board's review of the record reveals that further development of this issue is required. In an October 2011 statement, the Veteran's wife noted that their son was in receipt of Supplemental Security Income benefits through the Social Security Administration (SSA). To ensure that the record is complete, the RO/AMC should obtain records associated with O.L.H.'s award of Supplemental Security Income by the SSA as such records are relevant to the current appeal and must be obtained. See Golz v. Shinseki, 590 F.3d 1317 (Fed. Cir. 2010); see also 38 C.F.R. § 3.159(c)(2). Further, O.L.H.'s mother has reported, and has submitted supporting evidence, that O.L.H. received treatment from Dr. Williams. According to a June 2012 letter, Dr. Williams had dictated a letter in support of the claim, but due to his busy schedule, had not been able to submit the letter to VA. The June 2012 letter notes that the Veteran's son had psychological and medical problems at a very young age and was enrolled in special education classes. A review of the evidence of record reveals that treatment records pertaining to O.L.H. have not been requested. On remand, efforts should be made to obtain these treatment records and associate them with the claims file. Further, the Board finds that a VA examination of the Veteran's son may aid in substantiating the claim. Thus, the Board finds that a VA examination of the Veteran's son is warranted. Accordingly, the case is REMANDED for the following actions: 1. Request from the SSA all medical records upon which O.L.H.'s claim or award of SSI was based. All records obtained or any response received should be associated with the claims folder. If the RO/AMC cannot locate any Federal records requested herein, it must specifically, etc, etc "

I might have mentioned the local vet I got 100% P & T for under Section 1151.

It sounded to me in 2017 you had a potentially 1151 case. The VA awarded him the P & T status because the colostomy bag can never be removed, and their malpractice caused a disability that will never improve.

It seems your husband was advised of the potential negative consequences of the surgery- but then again, it sounded to me like the colon operation was done by the Keystone cops.

Did Dr. Bash look into the 1151 aspect at all? If so was a claim filed specifically under 1151?

It is of course quite possible that no malpractice occurred.I am not a doctor but I did prove without any IMO that the VA caused my husband death.

Has he ever gotten any C & Ps at all per the remand?

I hope others chime in here- this is a  Very odd situation.

On July 4 2017 I asked:

"Has the letter from the doctor ever been prepared and sent to the VA?"

"It seems to me that the July 2015 award letter should have taken note of the "helpless child" claim".

Can you scan and attach the award letter decision here-cover your husband's C file #,name, address prior to scanning it.

What was done next- did you file a NOD?

Did you again send them the IMO from Dr Bash?

Have you ever determined if the RO even got the IMO?

We need more eyes on this situation.

I hope others will chime in....I am lost.....the remand archive date was May 5, 2015 due to claims appealed, on a March 2012 and Sept 2012 rating, and you mentioned the veteran is over 75- something is wrong here.

 

 

Edited July 24, 2020 by Berta
added more

[DonH]

Berta,

A lot of decisions made beneficial to my husband are  long overdue  Even though in my opinion, I believe he's been overlooked in a lot of areas. Yet my husband doesn't want to rock the boat. Since I'm just the wife and not the veteran unless he wants to push further, my hands are tied. The IMO written by Dr. Bash, seemingly as best we can tell  RO were the recipients of the IMO. Which I thought odd since they were mailed to BVA in Washington DC. Yet the return Green Card was stamped/signed as having been in receipt by the Wisconsin Office.

Berta....."I might have mentioned the local vet I got 100% P & T for under Section 1151."

Veteran's Wife Response: Yes, I remember.

Wife of Veteran response....Regarding 1151:  We did write a letter detailing  what occurred with my husband  as an 1151assertion; complaining that there were irregularities and negligence during his operation; although we never filled a formalized 1151 complaint filing.  I as the wife wrote a Layperson's observations of that fated day regarding the doctors' explanations to me, alarming me as not connecting quite right, The doctor's post surgery explanations occurred  while my husband was still sleeping after surgery.  My husband' remembers prior to the surgery it was so chaotic in the operating room that a feeling of doubt washed over him along with a foreboding instinct. We were additionally shook when going to after surgery counseling, we met with a completely new doctor who we'd never seen before and he mentioned the radiation had already zapped the cancer prior to the operation. My husband and I were both extremely upset because had my husband known this factor prior to surgery he wound have never gone through with the surgery. Long story short, we never filed an official 1151. just wrote a letter to that effect. We never received a response responding to our letter though. After reading about different varied circumstances in some instances filing an 1151 can work against the veteran.  We didn't pursue vigorously other than the Letter we wrote asserting 1151.

Berta....It seems your husband was advised of the potential negative consequences of the surgery- but then again, it sounded to me like the colon operation was done by the Keystone cops.

Veteran's Wife Response: True he was advised the possibility existed that he could lose his sphincter. Yet, they told him, the odds that he wouldn't had a higher percentage. Then, upon finding out the surgery could have been avoided after the fact was what really angered my husband exacerbating his PTSD.

Berta: Did Dr. Bash look into the 1151 aspect at all? If so was a claim filed specifically under 1151?

Veteran's Wife Response: No, we did not include that 1151 matter. Just wanted an IMO for the Rectal Cancer being AO connected presumed or not.

Berta.......Has he ever gotten any C & Ps at all per the remand?

Veteran's Wife Response Yes. Done by a Nurse Practioner who wrote the denial response to VBA......Dr. Bash lit into that fact!

"Has the letter from the doctor ever been prepared and sent to the VA?"

Veteran's Wife Response: Yes. But the VA objected to find that Dr. Williams because he was not a specialist. 

Berta........"It seems to me that the July 2015 award letter should have taken note of the "helpless child" claim".

Veteran's Wife Response: It was either ignored or denied at all times.

Berta.....Can you scan and attach the award letter decision here-cover your husband's C file #,name, address prior to scanning it.

Veteran's Wife Response: Please accept my apologies. I'm not at liberty to do so without hubby's permission. He is very private. I discuss matters as discreetly as possible because I learn though discussions to pass on learned information to him.

Berta....What was done next- did you file a NOD?

Veteran's Wife Response: No. Just waiting for further direction from our Representative. We have upcoming meeting coming up soon to hash out unresolved issues still pending..

Berta: :Did you again send them the IMO from Dr Bash?

Veteran's Wife Response: Yes. Somehow it was sidetracked to be redirected/sent to Wisconsin although originally sent to BVA in Washington, DC.

Berta-----Have you ever determined if the RO even got the IMO?

Veteran's Wife Response: Yes, by  green card having sent by certified mail return green card.

Veteran's Wife Response; Planning to send again with next course of action decided by our Representative.

Veteran's Wife Response: We have received  responses growing from the Remand In December 2018.

 

 

 

 

 

Edited April 10, 2021 by DonH
clarifying in more details.

[Berta]

If A  NOD is not filed within one year of a decision ( award or denial) then the veteran must re -open their claim with New and relevant evidence.

 

If I understand that the Award letter came in July 2015, your husband had until July 2016 to file a NOD.

 

Apparently no NOD was filed, as you stated.

 

If the decision holds a CUE, then a CUE claim needs to be filed.

 

It looked like someone was considering CUE  on the run down in this thread of his disabilities.???

Berta........"It seems to me that the July 2015 award letter should have taken note of the "helpless child" claim".

Veteran's Wife Response: It was either ignored or denied at all times.

Berta.....Can you scan and attach the award letter decision here-cover your husband's C file #,name, address prior to scanning it.

Veteran's Wife Response: Please accept my apologies. I'm not at liberty to do so without hubby's permission. He is very private. I discuss matters as discreetly as possible because i learn though discussions to pass on learned information to him.  

"Yet my husband doesn't wan to rock the boat. Since I'm just the wife and not the veteran unless he wants to push further, my hands are tied."

                                          Yes they are tied. He is the claimant.

 

Perhaps the representative can re-open the claim with the IMO from Dr. Bash.

 

Maybe a denial that could have been appealed ,on the Helpless Child can also be re -opened, with new and relevant evidence.

 

I regret I have no further advice to offer.

 

Maybe someone else here can help. But they would need his permission and then be able to read his award letter.

 

 

  

 

 

 

 

[DonH]

Well, I believe he was inside the VA System.  Would that be reason enough?