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.

[retiredat44]

I have muscle disease,,, at first I had no clue, then I thought it matched MS, then thought it was some other. The neuorologist either thought I was a kook, lying, or some took me a bit more serious.. this has gone on many, many years. In the service on active duty I complained... I had symptoms, and even recieved some meds. I had tremors and pain.

I was also being treated for toxic chemical exposure to fuels and cleaning solvents. I was even removed form my job and chmicals, but once again forced to work with chemicals and got sick again.

I fought hard trying ot get answerrs, but most neurolgist were either clueless, or refused to do more investigationg.. I went through aperiod of time during illness I coul dno longet sit up, walk, or feed myself. When I got better from the pancreas disease and operation, I went through a year of pysical therapy.

I lost al my muscles, tremors, involuntary movements, limbs jerking, chronic pain in all muscles, weakness, and much, much more..

A neurologist at the VA said it is myotonic Dystrophy (mostly associated with muscular dystrophy) Some symptoms can be caused and/or triggered by toxic chemicals. Finally a neurologist at the VA agreed to get me a DNA test.. The results was/are supposed to be ready now, or any day now. I have an appeal going for many issued including neurolgy issues.

I am interested to see how others are treated and f they get sompensation and win claims. Also, if they have to fight so damend hard to get help, and if they deny, deny, deny, and fight you to your death...

Good look...

I am not sure how much longer before I get more answers..

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]

I have muscle disease...I lost al my muscles, tremors, involuntary movements, limbs jerking, chronic pain in all muscles, weakness, and much, much more..

A neurologist at the VA said it is myotonic Dystrophy (mostly associated with muscular dystrophy) Some symptoms can be caused and/or triggered by toxic chemicals. Finally a neurologist at the VA agreed to get me a DNA test.. The results was/are supposed to be ready now, or any day now. I have an appeal going for many issued including neurolgy issues.

I am interested to see how others are treated and f they get sompensation and win claims. Also, if they have to fight so damend hard to get help, and if they deny, deny, deny, and fight you to your death...

Good look...

I am not sure how much longer before I get more answers..

Retiredat44,

Your experience is pretty much the same as mine. Hopefully, we can both get some results from the VA. I've also experienced most of the same symptoms you listed. I've had the DNA test, also. I've had nerve conduction studies, nerve, skin and muscle biopsy's, a dozen or more MRIs, and numerous other tests. It sounds like you and I are going through a lot of the same type of experiences.

Keep me posted.

JohnO

[retiredat44]

my legs and hands cramp and muscles twist, my fingers and toes can cramp and twist badly... I lose control of limbs (when awake or asleep..).. when I walk on heals my left arm does wing-bat movings.. flapping..

my left side is much weaker.. I am constantly fatigued.. I can't talk on my heals more than a couple feet,, on my toes just a few feet... than I wil fall. I cannot stand with my feet together with my arms out for mor ethan a fe seconds without falling...

my limbs burn like and pins and needles.. I have swelling (edema)

my arms and hands shake my legs also shake if un-supported..

I break into uncontrollable crying once in a while for no reason...

I suffer in chronic pain all over my body and limbs..

I have had tremors for 35 years..

trmors can be when at still but when I am moving they amplify... if I am holding an object soemtimes my arm wil just throw it or drop it..

I am extremely clumsy and often hurt myselft.. if I am clenaing around th ehouse i have fallen, cut myself badly on nearby objects...

just a long list of hell I go through..

if you first meet me, you wil just see my hands shake, especially if I am holding somenthing or writing.. but you my not see antyhing unisial, but if you are around me often, you maybe see things happen, or maynot... some days are worse than others...

I cannot walk long before I must rest... I get out of breath easily..

Edited March 27, 2011 by retiredat44

[Philip Rogers]

JohnO - please file for TDIU, yesterday, and then read 38 CFR 4.16(b).

pr

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.

[JohnO]

JohnO - please file for TDIU, yesterday, and then read 38 CFR 4.16(b).

pr

Thank you for your advise. I acted on Berta's advise posted below and filed for TDIU.

[vmo]

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