A little more than a year ago I went to the ER because I had sudden loss of strength and lots of nerve damage (roughly 50% of my body). After many appts. and specialists I was told by my neurologist I had ALS. After several months of improving they changed the diagnosis to motor neuron neuropathy caused by an unknown virus. We speculated that it was caused by a virus like west nile or endo or lime. Tests were done late because they insisted it was ALS, therefore none of the tests came back positive. So after more than of a year of trying to get my strength back I am being forwarded to a full MEB. My concern is that after a year of working my butt off to get back as much strength as possible that maybe I won't get medically retired but medically separated. Currently I am at about 50% recovered in my upper body and maybe 25% recovered in my lower body. Does anyone have any knowledge or advice on how my ratings might come back?
Motor Neuron Neuropathy
- Thread starter Repentance
- Start date
I was once told by an Air Force chief of neurology at WPAFB that I had ALS. He wrote in my records that he thought that's what I had but I would have to have another emg six months later to lock in the diagnosis. I didn't get better, but my next emg was normal. I later had a muscle biopsy that showed denervation atrophy. The one bad emg that led the neuro to say I had ALS showed widespread "axonopathy".
Two years later I now know I have myasthenia Gravis. I am seronegative so it was
Extremely difficult to diagnose.
ALS is rated at 100%
ALS also doesn't get better... Ever
You may have had a case of a virus such as Guillan Barre or something like it.
The VA can rate residuals but for this sort of thing their ratings are kind of whacked... They rate based on range of motion, not nuscle weakness.
I was initially misdiagnosed with somatofrom disorder by a VA nurse practitioner. I was able to get that misdiagnosis changed to myasthenia Gravis, but it took two strongly worded letters by two neuro opthalmologists AND an email to someone on the VA secretary staff to get it fixed.
Heading into the MEB without a diagnosis places you at a distinct disadvantage. Do everything in your power to request referrals and more testing. Have they done any spinal fluid analysis? Have they checked you for MS or Myasthenia Gravis?
Two years later I now know I have myasthenia Gravis. I am seronegative so it was
Extremely difficult to diagnose.
ALS is rated at 100%
ALS also doesn't get better... Ever
You may have had a case of a virus such as Guillan Barre or something like it.
The VA can rate residuals but for this sort of thing their ratings are kind of whacked... They rate based on range of motion, not nuscle weakness.
I was initially misdiagnosed with somatofrom disorder by a VA nurse practitioner. I was able to get that misdiagnosis changed to myasthenia Gravis, but it took two strongly worded letters by two neuro opthalmologists AND an email to someone on the VA secretary staff to get it fixed.
Heading into the MEB without a diagnosis places you at a distinct disadvantage. Do everything in your power to request referrals and more testing. Have they done any spinal fluid analysis? Have they checked you for MS or Myasthenia Gravis?
I have seen ten neurologists over three years. They do have strength rating scales but basically the standards are so high, you have to be darn near paralyzed to meet their standards of weakness. Example: I have bilateral illopsoas weakness, to the point that I cannot climb stairs because those are the muscles that lift the leg/foot off the ground. Yes I can move them in the full range of motion and if rested enough I can lift the leg against gravity. But I have zero endurance, literally no stamina at all. Mayo clinic rated the weakness at 4/5 or 4 out of five on a scale of zero to five with zero being complete paralysis of the muscle and five being full strength. So despite the fact that I can barely walk when rested and cannot walk at all when tired, I am at nearly full strength as per a neurologist scale. It is preposterous, yet all neuro's use this scale.
I wound up taking pics of both thighs and sending them to VA so they could upload and see the very obvious thigh muscle atrophy very much more porminently on the right side. Then they rated both legs at 40% plus bilateral factor for "leg radiculopathy and atrophy of the right lateral aspect of the thigh due to myasthenia Gravis"
Make sure the VA sends you to a CP certified neurologist. Demand it. A standard MD or nurse practitioner will only do range of motion and NOTHING more... Your self described symptoms of weakness will not be quantified and will fall on deaf ears
I wound up taking pics of both thighs and sending them to VA so they could upload and see the very obvious thigh muscle atrophy very much more porminently on the right side. Then they rated both legs at 40% plus bilateral factor for "leg radiculopathy and atrophy of the right lateral aspect of the thigh due to myasthenia Gravis"
Make sure the VA sends you to a CP certified neurologist. Demand it. A standard MD or nurse practitioner will only do range of motion and NOTHING more... Your self described symptoms of weakness will not be quantified and will fall on deaf ears