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@njed

Mentor John - Thanks for the update and great news! I was told the same, my axonal PN is progressive but, my neuro doc here in NJ also feels that in my case, the progression appears to have slowed down and she commented that in the future, it could level off. I saw the doc in mid September. I am intrigued with the Protocol 525 and I've been reading up on it. My neuro doc also wants me to take balance therapy, start tomorrow. No cure but if something might help, I'm willing to try it. By the way, appreciate all you do in helping myself and others. Million thanks!
Ed

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Replies to "Mentor John - Thanks for the update and great news! I was told the same, my..."

Thanks Ed! We’re all in this life together and being able to help others also helps me.

@johnbishop , ditto what he said! To both of you, my docs have never mentioned any progression (or regression) expectations of my neuropathy. I’m more accustomed to “we’ll wait and see” and deal later. Obviously I want to do all I can to maintain and even improve, hence making this Mayo forum a real lifeline for me. I’m going to ask the direct question about expected progression (or not) in my next visit - that’s on me. But may I ask how it’s measured? I think for me, comparison of EMG’s may already be showing, and I need to ask if they’ve shown changes, though my last one was 2 yrs ago I think. But for folks that have SFN or negative EMG’s, how is it measured? Strength, performance tests etc?