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Old 07-17-2017, 08:37 PM #1
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An update on my 16 year battle with peripheral neuropathy.

I had an emg/ncs done today of my legs and feet. I have had emg/ncs's done periodically since 2003. As expected todays test showed considerable deterioration of my sensory /motor nerves in my legs/feet since my last emg/ncs of my legs/feet about 5 years ago. The damage then was already categorized as severe, so Im not sure where the categorization goes from there. Even worse this time i felt nothing in my feet or lower legs during the testing. the only place i felt anything was behind my knee.

About a month ago I had an emg/ncs done on my hands, arms with similar results. Not as bad as my feet/legs but still categorized as severe. Of course i didnt get the report yet but the doctor performing the test and I had a back and forth unrushed discussion after the test.

So, no good news today, but i wasnt expecting any.

I wonder if the damage level I have now is approaching what they have categorized for Elaine D as profound, being i didnt even feel the test, though i have never heard that category used here.
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Old 07-19-2017, 10:38 AM #2
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Dear echoes,

The category beyond 'severe' is 'profound'. i have profound PN in two nerves in both legs and severe PN in the third nerve, diagnosed first in 2010, but developing for about 5 years before that. I don't feel the test, either. It was repeated by my current neurologist in 2013. With the same results.

This was the original diagnosis:

INTERPRETATION:
1. PROFOUND AXONAL NEUROPATHY: RIGHT AND LEFT
PERONEAL AND TIBIAL NERVES.
2. PERIPHERAL NEUROPATHY: RIGHT AND LEFT PERONEAL AND
TIBIAL NERVES.
3. RIGHT AND LEFT SURAL NERVE NEUROPATHY.

Since the diagnosis I have become almost completely disabled by the PN in my legs. The calves have atrophied markedly and I wear braces, and walk with a walker.

I do NOT have PN in my arms and hands, but I do have SFN in the skin of my upper body. I take 3600 mg of Gabapentin for the pain (often called 'skin on fire').

I wish you the best possible outcome with your PN.

Regards, ElaineD
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Old 07-19-2017, 12:22 PM #3
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hi, i've noticed that my leg muscles have definitely atrophied as well. I used to be a runner for many years and had strong legs. when i get a copy of the final report i will post the conclusion. I have pn now for 16 years and it has been progressing steadily in my feet, legs, arms and hands. feet are the most affected then legs, hands and arms in that order. The cause of my sensory motor large fiver neuropathy is exposure to toxins. I rememberd that you have referred to your PN as in the profound category of damage. I have not heard of the category profound, but it makes sense once you reach a certain level of damage that is beyond severe. not a place either of us would like to be im sure.
thank you for answering and your posts in general. i continue to post results and articles from time to time, even though my cause isnt that common and my posts dont elicit much of a response most of the time, in case someone in a similar situation or exposure is searching online and comes across my posts and it can possibly help them.
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