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Small fiber neuropathy /autonomic neuropathy doctor in Missouri
Neuropathy | Last Active: Nov 29, 2022 | Replies (6)Comment receiving replies
Yes, I have looked at many of those. I typically cannot get past the nurse practitioner. My Small Fiber Neuropathy has progressed to Autonomic Neuropathy. I see a once a year Neuro at Wash U, but communication is difficult. I am tired of feeling like I’m not just falling between the cracks, but I’m in the crack and no one even notices. My saving grace is my excellent GP. I need a neurologist that has an interest in SFN and Autonomic Neuropathy and who is willing to provide follow through more than once a year. I am very frustrated and very discouraged.
Replies to "Yes, I have looked at many of those. I typically cannot get past the nurse practitioner...."
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I can understand being discouraged, especially when there really is no cure for neuropathy, only treatments for the symptoms. When I was diagnosed with idiopathic small fiber peripheral neuropathy after it had progressed for 20+ years and I finally decided I needed to know what the diagnosis is, my Mayo neurologist told me there is nothing that will help with the numbness and tingling which are the only symptoms I had. He just said to let them know if it gets worse and sent me on my way. That's when I started searching and found Connect. I started doing my own research until I found something that helps me. If you like to do your own research, Google Scholar (https://scholar.google.com/) finds a lot of the latest medical research which I found helpful.
I also found the following two sites useful, in case you haven't seen them:
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/