I will bet everyone here that their docs never, ever indicated that this stuff [insert any expletive to replace 'stuff'] would require any sort of lifetime commitment at the beginning. I was sort of lucky in that a PA, about six months from my 'onset' HINTED that if there was no improvements in a year that damage could be permanent or that other issues could be complicating the neuropathy.
Boy did I find out that any and all 'issues' could complicate things!
Daniella, you are picking up on all the key points very quickly! The philosophy here from most of us is to support each other, and we each have our own ways of support. First off, is not to find the CAUSE of the neuropathy per se, but how to treat it and deal with it the best we can! Second is to get our lives and bodies in the best possible ways to heal as best they can IF they can. Lastly is to get the best testing to narrow down diagnosis[ses] as possible so as to get the most PUNCH of any meds and therapies that are out there for US to use.
Such as testing for auto-immune conditions and dealing with those as quickly as possible...should that be the case. Damage done by other medical conditions sometimes can be repaired thru the better living....other times, such as mine I can heal in parts and get destroyed just as fast in others due to the auto-i issue.
Partly a luck of the draw, I guess. All 'things' fell into place that got my own set of 'dominoes' to fall and set a sort of neuclear chain-reaction going...probably one that's changed my DNA, but testing such aspects is still waaay in the 'science-fiction' future. I hope it is not so in your case, but, in many ways, your case, it is similar in ways to those who undergo gastric bypass and other surgeries of that nature.. you are partly damaged...the extent is taking it's toll and you have to do all you can to compensate....for the best possible outcomes. It's a lot to DO and overcome!
I for one, do not EVER pretend that I have no nerve damage...I pretend that what pain I feel is NOW that of getting better, not worse. We all have learned of that DEVIL fear of getting worse...it's always present, just ignore it [of course, far easier said than done!] unless it's getting truly new and dangerous, go for the good things!
It's one thing to 'accept' what you have, it's another, yes to be proactive and do all you can to make it better! A , a heartfelt one! - j