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Just Diagnosed with Small Fiber Neuropathy

Neuropathy | Last Active: Aug 12 10:26am | Replies (236)

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@piross1528

Hey Man, my name is Steve—I am 35 and have what they are calling “suspicious of SFN” so far everything looks normal regarding tests. My symptoms are not so bad yet but the is my second time having the feeling of needles in my skin. It’s rough. Also looking for answers and someone to talk to. I’m worried I’m going to be hit with the SFN idiopathic diagnosis—what’s the prognosis for that sort of thing?

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Replies to "Hey Man, my name is Steve—I am 35 and have what they are calling “suspicious of..."

Hello Steve @piross1528, Welcome to Connect. It's normal to worry some about the unknown when it comes to a diagnosis for a condition you don't know much about. There is another discussion where members have shared their neuropathy journey and what helps them that you may want to read through some of the posts.

Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I had my neuropathy 20+ years before seeking a diagnosis and then when I found out I had idiopathic small fiber peripheral neuropathy, I was back to square one - they didn't have a treatment that could help the numbness in my legs and feet. The prognosis is an unknown but if it were me, I would just start learning as much as you can about your condition and what options for treatment you have. Also, there are a lot of companies out there with products claiming to cure neuropathy. I'm a not a doctor or medical professional but can tell you from all my research that there is no cure for neuropathy but there are a lot of options to help with the symptoms of pain, tingling and overall misery.

I would bookmark these two sites to learn more about neuropathy.
-- Neuropathy Commons: https://neuropathycommons.org/
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/

You mentioned they are calling your diagnosis "suspicious of SFN". Do you mind sharing more of what tests you've had to diagnose the neuropathy?

I have had that diagnosis for almost 10 years now. I actually moved to AZ because the dry hot climate seems to help. I have tried I think, almost everything, and the only thing that works for me is pregabalin and a low dose opioid patch. It allows me to function. I would say I have been stable the past 3 years.