YOu state that you've had PN from '93 then also indicate that in the last five years your PN has gotten worse? I was never aware of an excaberation of your own PN events. Needless to say, I do wonder about YOUR test results and what actual records YOU have on them to help you understand whether you do have immune or auto-immune issue[s]-and of what kind.
As for not understanding the Pains? I have posted here and elsewhere that I had seriously considered amputation at times, but for possible residual nerve-memory issues! My neuropathy was progressing up to my torso and thru it at the rate of at least one INCH a month! Knowing that I'd already some autonomic dysfunction vis-a-vis the lymphatic systems due to PN, I was in a ripe state of high alert myself. I just sat myself down and said...HEY! It could be worse, ya could have Cancer! And then, guess what? Dah Dah! And then, more stuffs! Now if a doc tells me you have X? I go why not?
We should not be in any match here to say who's got it worse... not at all. But, to espouse one approach as the end all and be all without other considerations is not always the route others have to take. Nor, should they necessarily. We are all here to HELP and INFORM others about their options, and to empathize with their pains, as we've got them too. While I might state my opinions, I do try to make them distinct from information presented. I present articles or information sites in-situ without editing to avoid any biases I might have one way or the other [aside from that it mite be interesting]. I know you have read many of them and have cited them in part in other places. To get things out of context at times tho, is like listening to the 'minute' news. Lots can be lost to those interested without the effort of actually LOOKING it UP! Each 'beneficiary' of PN should have to LEARN and Actually LOOK up stuff for themselves! We can and do provide starting points? But the actual learning has to be THEIR OWN.
Weill and others serve their function in terms of helping encourage US to learn, but WE have to do our own job of learning to get wherever it is we need to be.... [I think that's from Douglass Adams' Dirk Gently-the Psychic Detective-or a deriviative of same]. Hugs and hope always - j
At times, I realize and appreciate that I am not an 'animal'! Given my state, I'd likely have been put-down a while ago! Go figger.