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Motor Neuron Disease


First, I'm hesitant to post a topic to this thread that may not be directly related to the intended purpose. My deepest sympathies go out to anyone that has ALS and also to any family members of someone with that disease. I would however suggest that the topic be broadened to include other motor neuron type diseases.

I currently have a diagnosis of "motor neuron disease." My symptoms are progressive muscle wasting and also progressive loss of strength. I also have chronic pain from head to toe and am told by neurologists that the pain is unrelated to my motor neuron disease. My disease does not fit "ALS" because mine is progressing much more slowly. In fact, it does not perfectly fit any of the named motor neuron diseases (spinal muscular atrophy, ALS, and others).

I've been diagnosed with ALS when my disease was progressing rapidly in the mid-1980s. I've also been diagnosed with Spinal Muscular Atrophy. My current neurologist tells me that I do not "fit" any of the named diseases including the two mentioned above. I've seen some of the best neurologists and neurosurgeons in Houston. I've been going to and been tested by these physicians for over 20 years.

I will add that my initial symptoms of weakness and wasting began (very slowly) soon after I returned from Vietnam (1972). I noticed a slight loss of strength in my hands and also a slight tingling in my lower left leg. A myelogram performed at the time ruled out spinal cord (pinched nerve-type) issues. I scheduled an exam at the VA hospital with an orthopedist (I still have my blue VA card with the appointment scheduled on the back). The VA doctor refused to examine me because I'd seen a civilian doctor about the same issue beforehand. The VA doctor left me in a huff on the examining table. He told me I needed to decide who was going to treat me. I was speechless and did not try the VA again until late 1980s.

I've attempted since the late 1980s to reopen this issue with the VA but in the past have become frustrated with the bureaucracy and have given up. This time, I'm making some progress.

I just received 30% PTSD, 20% DMII, 10% CAD, and 10% tinnitus. My claim for "ALS", progressive muscular atrophy, progressive (diabetic) neuropathy, upper and lower limbs, and sleep apnea are deferred. Records submitted by my cardiologist warrant that I receive at least 30% CAD rating, and more likely a 50% rating. I have strong evidence already submitted supporting an award for neuropathies in the upper and lower extremities. I also have a body of psychiatric evidence supporting 50% or higher award for PTSD.

My American Legion SO got a bit overzealous in applying for ALS and progressive muscular atrophy at the same time. I have sent 25 years of neurology records to the VA. I left nothing out. At the same time my records are confusing and complicated.

My question is how to proceed? Do I need to worry about the motor neuron VA claim? Do I wait for the VA to respond? Do I seek a VSO that has experience with motor neuron diseases? I'm retired disabled by Social Security standards since 1986. I have a strong case for getting to the 100% VA award without the motor neuron disease battle.

Please offer suggestions on where I need to go from here. Thanks in advance.

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"I'm retired disabled by Social Security standards since 1986."

Is the SSDI solely for any of these?

"30% PTSD, 20% DMII, 10% CAD, and 10% tinnitus"

"Do I need to worry about the motor neuron VA claim?"

If they properly award you for peripheral neuropathy due to the DMII -perhaps this would be the same comp amount as if they awarded for the motor neuron condition -which sounds difficult for them to properly handle.

The inservice nexus for the DMII and PN is already established so that too is something to consider as a claim for motor neurton might be very difficult to find a strong service nexus for.

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Forgot to add-the heart disease ratings are here in the Schedule of Ratings.

That 10% might be too low.

Did the VA defer TDIU or make any statement as to why they did not consider TDIU?

Edited by Berta

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Thanks for replying.

I re-read my letter from the VA. I am at 30% for my CAD/IHD. My VA rating is 70%. This is all new. I just received the letter, taking me from 0% to 70%. I'm 30% PTSD, 30% CAD, 20% DMII, 10% tinnitus. I'm told in the letter that a neurological exam for my neuropathy in my four limbs is forthcoming. I have a very strong file supporting a claim for each limb.

I am disabled by SSDI for the motor neuron disease. Subsequent medical records sent to SS show the CAD, peripheral neuropathy, and DMII. However, the motor neuron disease has always been primary.

Sequence of events: diagnosed with at the time ALS in 1986. Occasional neuropathic pain became chronic in 1989; motor neuron disease was re-evaluated and I was told I had Spinal Muscular Atrophy in 1989, was also told that chronic pain was unrelated to the motor neuron disease. January 1996, suffered heart attack, diagnosed with IHD/CAD, began treatment at that time for hypertension. 2001, diagnosed with DMII. Also, received complete battery of tests for diagnosing my motor neuron disease (biopsy's, MRIs, EMGs, nerve conduction studies) in 1985, 1986, 1989, 2001, and 2007. I was told by my latest neurologist that I do not have SMA nor do I have ALS. He said that I have a "motor neuron disease." Diabetic neuropathy and small fiber neuropathy were diagnosed in about 2008. I was diagnosed with sleep apnea in 2007.

My primary complaint is the motor neuron disease, with secondary chronic pain/peripheral neuropathy. You can see from the amount of testing by Houston's finest that I have a very difficult case to diagnose.

To clarify my query, I know from numerous neuro exams that presenting a case for SC will be difficult. I'm wondering how far to push for SC since I'm probably going to get to 100% without it.

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Forgot to add-the heart disease ratings are here in the Schedule of Ratings.

That 10% might be too low.

Did the VA defer TDIU or make any statement as to why they did not consider TDIU?

TDIU has not been addressed. I thought I needed at least one SC at 40% before I can apply. I've not applied for TDIU.

Please advise.

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If you are not presently working-and believe your SCs hinder employment- you should apply for TDIU.

It doesnt matter what your SC rating is.

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