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]

I couldn't read the right hand side of the 'related to ' part but were all denied.

Still , was an MRi of your husband's brain done?

Was the PN claimed as secondary to the DMII?  as well as to the motor neuron disease?

The 10 % DMII is VERY low. But maybe it is correct...?????

 "Yet, the Neuromuscular Head Physician conceded that my husband's illnesses was an ALS variant because hiss 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."

 

I assume you have that statement in the veteran's medical records?

Do you have a complete copy of his VA medical records?

 

What was the actual medical terminology the VA used to identify the Soft Tissue Sarcoma ( Rectal cancer)?

Please check out this link from Chris Attig:

https://www.veteranslawblog.org/als/ 

 

Chris Attig, a superb veterans lawyer and also a member here at hadit, won this case regarding a Motor Neuron disease.

I hope he comes aboard here today....

 

 

[broncovet]

Peripheral Neuropathy is often related to DM.  But, before you run to the CUE axe, check and see if the 38 CFR 3.156 knife may just work better.  If they denied you because there was no evidence, then you simply reopen and resubmit the evidence retaining your "supertool" of the Benefit of the doubt/equipose.  Look carefully at both 3.156 B (pending claim) and the other winner winner chicken dinner of 3.156 C (missing service records) 

While I agree it isa compelling  arguement that he is SC for the PN for right upper extremity, but denial for the same condition on his lower extremeties makes "0" sense.  I guess VA is saying, "Ok, this is a miracalous PN that manages to affect the hands, but that PN that effects the feet must have been caused by something else that isnt service connected, as we dont wat to pay benefits on your FEET PN."    Duh.  If the PN is service connected for the hands, its service connected for the feet, too!    Your diabetes is not somehow causing PN in your hands, but, when (the same blood) goes to your feet, it then transposes and no longer causes PN.  ITS CRAZy stuff.  

If you are the note taker, hopefully you have access to all medical records.  However, you need to compare your records with those VA has by ordering a full copy of his cfile including medical records and Service records.    You need to try to determine what is going on here:

1.  Did VA deny you because they were lazy and top sheeted you, not bothering to read? or

2.  Did VA deny you because they were lazy and never got your records at all?  

Number 2 suggests you reopen due to n and m evidence, number one suggests CUE axe.  

[Berta]

to add; maybe I asked above

Was a Brain MRI done by VA?

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4794906/

 

There are many differential diagnoses for Motor Neuron Disease….

Hirayama disease ,for example…if you search  for  more info.

I am adding this link so I don’t forget it:

Dont know why this block came up in my post?

Quote

 

https://www.hindawi.com/journals/nri/2012/608501/

It regards MRIs of brain re: ALS.

In my case I was able to decifer my husband’s MRI of brain to succeed in my FTCA case, and 1151 claims.

After he died I was able to use a photo of an autopsied brain  and marked it as to the MRI findings as to 6-7 areas of VA induced brain damage, in support of the wrongful death claims. 

The VA medical records should reveal a narrative of the MRI findings.

The VA had a brief MRI assessment, typed ..but the true picture and the beginning of a VA cover (I proved) was within 6 pages of very hard to read handwritten notes regarding in part the MRI.

My point here is that MRIs can be very definitive -if a real VA neurologist reads and assesses them.

Edited June 26, 2017 by Berta

[broncovet]

Remember to focus on stuff that will yield you the best result.  Lets use an example:

Lets say you are 90 percent SC now.  To get to 100 percent you need an additional 50 percent, not the 10 percent your second grade teacher taught you.  

So, with hearing loss, you are unlikely to get over 10 or 20 percent, unless hubby uses sign language to talk to you.  Fretting with the hearing loss rating, of itself is futile as it probably will not get you to 100 percent.  

However, if hubby is not working for example and is unable to work due to sc conditions, then you may want to pick the low lying fruit, which may be his PTSD which could have been lowballed at 30 percent, or it could be the low lying fruit is TDIU.  

Dont forget to think about yourself and your family, too.  DEA Chapter 35, and Champva are HUGE benefits.  DEA if your kids want to go to school, and Champva is the very best health insurance available.  

Both of these require 100 percent P and T.    And, dont forget about DIC for you, too.  Many Vets think of this for their wives, but it sounds like YOU have to consider this as PTSD Vets dont always think clearly.  To get DIC you need to have him Service connected at 100 percent for 10 years before he passes, then it does not matter why he passes.   Under 10 years and he has to pass from service connected conditions for you to get DIC.  Dic will mean an extra 1400 per month or so for you, as his sc benefits will also pass when he dies.  If he was thinking clearly, he would want you to be taken care of after he dies. 

[Berta]

What is his rating now? TDIU or 100%?

When was the DMII rating made?

Is that 10% still comparable to the VA Schedule of Ratings Here at hadit?

[DonH]

His rating is 100%---the 100% came with the Prostate Cancer diagnosis. His Prostate cancer is being 'held in check" with a hormone shot at this point and time. He began having the shot every 3 months; now it's every 6 months. As long as the hormone shots keeps the cancer maintained and his PSA low, the hormone shot will continue. If suddenly, PSA rises to not be controlled, they VA Doctors will revert to radiation. They are not desiring to do radiation due to my husband having already had radiation with the rectal cancer.

A MRI was done. But not on the brain. The did the MRI o his vertebrae.

The Neuropathy was denied prior to the DM2 diagnosis. My husband is not on medication for DM2 and prior to the Motor Neuron disease. HIs DM2 is controlled by diet at this time.. Actually in 2015, his DM2 was diagnosed. However, beginning in 2011 when my husband decided  upon my late father's insistence, as a Disabled Vet himself,, my husband sought medical treatment at the VA, the medical staff like nurses, upon perusal of vital records//charts would always inquire  did he have diabetes.  We have an Agent we work with.......so I have submitted the new diagnosis as well as my concerns regarding issues we need to revisit, My husband has been PTSD diagnosed going back to 2008-----however, we are seeking an increase. I thought he should have been at least 50% from the very beginning. The rectal cancer  was denied in 2011; It is at the BVA on appeal since 2015--it was remanded in May 2015; we had a Video conference in December of 2014. My husband turns 75 on July 19th. It's still no word from the appeal since May 2015.

Edited July 10, 2017 by DonH
adding more details