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DiscussionFrustrated and tired, every test came back normal
Neuropathy | Last Active: Jan 29, 2023 | Replies (7)Comment receiving replies
Replies to "@kumye, I know it's the pits not knowing the cause of small fiber neuropathy but the..."
Hi @johnbishop, while your comment about not finding a cure is surely true for the vast majority, I think there are a couple of caveats that should be added. The first is that it assumes a complete and properly executed program of testing and evaluation: idiopathic neuropathy is not just a diagnosis of our collective ignorance, but also of convenience.
The second is that the list of available diagnoses and treatments is growing, even if too slowly for most of us. There was a promising clinical trial (I don’t know the status) for one type of amyloidosis, for example. The identification in 2021 of RFC1 expansions as a possible factor in a significant number of sensory-only “CIAP” cases strikes me as an important development, because it opens the possibility for treatments, however remote. It also helps because every time the idiopathic bucket gets smaller and more homogeneous, the less likely it is that evaluation of treatments is confounded by the fact that a cohort may actually contain a large number of fundamentally different diseases.
Your counsel of acceptance is surely the most helpful advice for most people most of the time, but I think there’s still room for a little hope as long as we are realistic that the odds are long.
John - Once again, I think your insight on PN is dead on. The "even knowing the cause is not going to help you find a cure" is exactly right. And, with PN, that is the probably as hard to accept as the pain and numbness and balance issues we live with each and every day. I've expressed this in the past that sooner or later, one realizes that living our life the best we can makes more sense than chasing the reason why we ended up with PN. We wake up each day with this rotten disease and that isn't going to change but what can change is how you choose to live with PN, dealing with it and find things that work offering SOME relief.