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Originally Posted by Joe2324
Thanks Snoopy again for your time.
Yes you are right that people can read sx and then develop some sort of functional neurological condition afterwards -- but I'm not sure if that's me. My sx seem to fit some sort of progressive neuropathic disease process like MH suggested.. but I have not ruled it out completely either and am open to the possibility. Thanks for the links btw.
As for MS - I appreciate your input on that as well. I know it can be a very difficult disease to diagnose but I appreciate the feedback from those who have have a better understanding of the illness and have a better feel for what I should be looking for and the type of questions to ask doctors in order to get a diagnosis/ even if it is just to exclude one possibility.
I will continue to search... but I'm just trying not to lose hope. I've read so many people on Facebook who were simply told their condition was IDIOPATHIC and doctors just move on and leave them largely untreated.
While I realize there may be no cure/ better treatment.. just not knowing that is going on or even if there is a possibility of a better course of action is killing me.
Thanks again.
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An idiopathic diagnosis is a very difficult thing to deal with emotionally. It would be great to have a neurologist and the medical community say "this is what you have, this is why it happened, this is what your prognosis is like, this is what we can do for you." Without that, we are left with an uncertain prognosis, no understanding of the underlying condition that might manifest itself in other ways, and no effective treatment.
I do think that there is some hope out there. The research field is identifying new causes of neuropathy (autoantibodies/autoimmune SFN, deoxysphingolipids, etc.), new treatments for nerve regeneration ( muscarinic antagonists), and better neuropathic pain treatments ( sodium channel blockers). I think that the new treatments in the pipeline will help transform the dumpster fire that is neurological treatment for small fiber neuropathy to something better. It will take time though. I don't believe though that your average Joe Blow Neurologist is going to be able to help much until new knowledge and new modalities of treatment are distributed. As you have found out, they have been taught that if the neuropathy is not one of these 8 things that can be treated, further testing is not worth it because nothing can be done but manage pain ( often ineffectively).