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]

"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?'

I guess I am explaining this wrong. He never had hemorrhoids. This was a misdiagnosis.

When he went to the other VAMC it was to see why the hemorrhoids got so bad with heavy bleeding and pain, and they found that he had adfanced colon cancer , not hemorrhoids. 

VA did not timely diagnose and treat his colon cancer and they could have.

I offered to help him file FTCA case (the first step in a lawsuit against the VA) but I also advised him that would reap a lump sum payment (I knew he would win that) and he would not receive any 1151 comp until the settlement amount was recouped. He preferred instead to just have the Section 1151 because he is not very 'money' savvy and told me he would have spent it all on Elvis paraphernalia.

The VA medical error could have  shortened his life and killed him by now. I think the colon cancer was Stage IV when they found it. Amazingly he is still alive and doing well. No alcohol, no smoking,good diet  and he walks a few miles- about 4 times a week.

As your agent would know ,malpractice is determined when the diagnosis and treatment is not comparable to the "standard and Usual medical community." Meaning -non VA doctors would have taken different steps to properly diagnose and treat, in a timely fashion, the  actual cause of his rectal pain and bleeding.

 

 

 

[DonH]

Got it! Thanks!

God bless your friend and God bless you!

[DonH]

Berta,

I've inserted the referenced issues discussed previously regarding my husband's BVA Remand since May 2015.

BVA Appeal on Remand since May 2015.docx

[Berta]

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

In Part:

"As discussed above, a TDIU claim is part of this appeal pursuant to Rice, 22 Vet. App. 447.  As any decision with respect to the claims for an increased rating for PTSD and hearing loss may affect the claim for a TDIU, the claim for a TDIU is inextricably intertwined with the claims for an increased rating on appeal; as such, adjudication of the TDIU claim is deferred until adjudication of the increased rating claims."

"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"

"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. "

"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."(helpless child claim-)

"Accordingly, the claims for an initial rating in excess of 30 percent for PTSD and an initial compensable rating for bilateral hearing are remanded to the AOJ for review and re-adjudication."

"As discussed above, a TDIU claim is part of this appeal pursuant to Rice, 22 Vet. App. 447.  As any decision with respect to the claims for an increased rating for PTSD and hearing loss may affect the claim for a TDIU, the claim for a TDIU is inextricably intertwined with the claims for an increased rating on appeal; as such, adjudication of the TDIU claim is deferred until adjudication of the increased rating claims."

The peripheral neuropathy was denied because it had been diagnosed as alcoholic neuropathy.

It will take an Independent medical opinion to re-open that claim with a full medical rationale that the PN is due to the DMII.

In my opinion, the hearing loss claim, and the rectal cancer claim will definitely need an IMO.

If he falls into the higher PTSD rating criteria  ( here in our Schedule of Ratings forum)with evidence, that might not need an IMO.

There are potentially newer claims you mentioned, but I feel they too will need a strong IMO.

After this remand it appears that the DMII claim was awarded as well as the 100% Prostate cancer.

It would take an IMO to determine if the SC prostate cancer metastisized to the rectal cancer.

I hope you have a good vet rep or VSO helping you....because the July 6th 2015 award letter might have render the TDIU claim as Moot.

There is very little time left ( with a remand over 2 years old) to obtain any evidence to support the remanded issues. Have you heard anything at all, from the VARO on the remand or received any letters about what they still might need?

 

 

 

 

 

 

 

 

 

 

[DonH]

Have you heard anything at all, from the VARO on the remand or received any letters about what they still might need? 

No, have not heard from VARO regarding the remand or have not received any letters about what else still needed.  Waiting to have a follow up discussion with Agent about new claims and adding new information to sure up appeal on denials as well as remanded issues.

Denial of the Neuropathy to be connected to alcoholism has been a challenge. VA gets something in their heads and everyone who assesses the case chants the same reframe (prior to DM2 diagnosis).

 

Yes......"After this remand it appears that the DMII claim was awarded as well as the 100% Prostate cancer."

[Berta]

To add:

from the remand:

"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."

 

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".