I requested that USC provide me with copies of all of my tests so that I can have them for any future neurology or ALS clinic consults. I received them today and the EMG/Nerve Conduction Study is very unnerving (to coin a phrase).
I cannot read or understand the numerical evaluations, and hopefully I can get them explained to me so that I can understand the exact parameters of where the disease stands in my body. But the narrative under "Impression" is quite grim:
1. By nerve conduction studies there are axonal loss changes noted in the upper extremity nerves. This is likely a reflection of atrophy of the recording muscles, stemming from antegrade degeneration of the axon, which most likely in the (emg) setting is secondary to motor neuronal loss....
2. Active denervation in multiple myetomes, upper extremities more than lower extremities. Fasciculation potentials in multiple myetomes. Chronic denervation changes with moderate significant loss of functioning motor unit potentials, more severe in the upper extremities. These are noted irrespective of mytomal distribution. These findings are supportive of the diagnosis of motor neuron disease."
Ouch. As I read this in plain English, I've lost some axons (nerve junctions) completely in my hands, and have both "active" and "chronic" denervation all over my body, though worse in my hands. How much denervation is necessary before my leg muscles start failing? I don't know. Right now I wish I hadn't seen the report, but I suppose it is better to know where I stand.
Sorry to bore you all but writing this, getting it "out", makes me feel better. Which after all is the purpose of a support forum, right? Especially when you get scared, like this scares me. Got to get the PMA back
I cannot read or understand the numerical evaluations, and hopefully I can get them explained to me so that I can understand the exact parameters of where the disease stands in my body. But the narrative under "Impression" is quite grim:
1. By nerve conduction studies there are axonal loss changes noted in the upper extremity nerves. This is likely a reflection of atrophy of the recording muscles, stemming from antegrade degeneration of the axon, which most likely in the (emg) setting is secondary to motor neuronal loss....
2. Active denervation in multiple myetomes, upper extremities more than lower extremities. Fasciculation potentials in multiple myetomes. Chronic denervation changes with moderate significant loss of functioning motor unit potentials, more severe in the upper extremities. These are noted irrespective of mytomal distribution. These findings are supportive of the diagnosis of motor neuron disease."
Ouch. As I read this in plain English, I've lost some axons (nerve junctions) completely in my hands, and have both "active" and "chronic" denervation all over my body, though worse in my hands. How much denervation is necessary before my leg muscles start failing? I don't know. Right now I wish I hadn't seen the report, but I suppose it is better to know where I stand.
Sorry to bore you all but writing this, getting it "out", makes me feel better. Which after all is the purpose of a support forum, right? Especially when you get scared, like this scares me. Got to get the PMA back
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