ptsd Motor Neuron Disease

[JohnO]

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.

[JohnO]

JohnO. Did you ever have a spinal tap or a nerve biopsy??

Both.

The nerve biopsy was a 2" incision on the outside of the left heel. I had my first muscle biopsy in the bicep at the same time. I had another muscle biopsy on the other bicep about twenty years later. I remember that the nerve biopsy was the more uncomfortable of the two procedures.

My memory's more fuzzy about the spinal tap (lumbar puncture). I've had one for sure. I might have had another, can't remember right now, I've had these tests over a 25 year period. I've also had two myleograms. The needle part feels about the same for both tests. It is not painful, more like pressure than sharp pain.