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After diagnosis, do you continue to see your neurologist?

Neuropathy | Last Active: Jul 29, 2023 | Replies (15)

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@johnbishop

@robindancer5678, Your question is a good one that I suspect a lot of folks diagnosed with neuropathy have thought about if not asked the question directly. I was diagnosed with idiopathic small fiber peripheral neuropathy in 2016 by a Mayo neurologist after not bothering to seek a diagnosis for over 20 years of symptom progression in my toes and feet. I only have numbness and was told all along there was no medications that would help and my Mayo neurologist confirmed that when I was diagnosed. That started my journey on learning as much as I could about my diagnosis and treatment options available that might help which was when I first found Mayo Clinic Connect. Haven't seen a neurologist since I was diagnosed. I posted my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/.

Two great sites for learning more about neuropathy that have been helpful for me:
--- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/living-well/
--- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview

Are you looking for information on possible causes for your small fiber polyneuropathy?

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Replies to "@robindancer5678, Your question is a good one that I suspect a lot of folks diagnosed with..."

Hi again John. I would like to think there’s an identifiable cause for this peripheral neuropathy so that I can address it, but I’m starting to think that it’s idiopathic and it’ll be a question of just managing it. Which is why I’m wondering if I would be seeing the neurologist again, or if I should try and find a different kind of specialist to approach managing it from a holistic perspective.