Why only limited diagnosis of cusses or PN?

Hello @tar94577, Welcome to Connect. Not an easy question for anyone to answer (just my opinion). I also have idiopathic small fiber peripheral neuropathy. There are different tests to determine if you have damaged peripheral nerves. The tests just show that you have neuropathy. I think the gold standard test from what I've read is the nerve skin punch biopsy where they take a small skin sample and physically count the number of nerves in the sample, more info: https://pmc.ncbi.nlm.nih.gov/articles/PMC9262281/.

I've often thought mine might be either hereditary or possibly because I have been in the pre-diabetes category which puts a person in the metabolic syndrome condition which has it's own known association with neurological conditions and neuropathy - The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/

Do you have pain with your neuropathy? Have you started any treatments or medications?

@johnbishop thx for the reply and links.

As to your questions:
1/ pain? Occasionally. In my right foot. My main symptom is numbness: in my left lower leg just above the ankle. And, in my right hand (when I bike) and in my right foot (toes to arch on good days or toes to heel on bad ones).
2/ treatment? My primary doctor has me on 2700 mg of gabapentin per day. (3times per day doses of 900 each). My current podiatrist is also having me go thru 5 sessions of ultrasound & a massage therapy of my right arch up to the behind of my shin.
3/nerve tests? The neurologists have each simply done a conductance (I think it was) test that showed them both: “yep, you’ve got PN.”

@tar94577 Gabapentin doesn’t do anything to help the numbness. I only have numbness and some tingling but no pain. Prior to being diagnosed with neuropathy from nerve conduction tests my PCP prescribed Gabapentin but after a few weeks I told her it wasn’t helping and she consulted with the specialist who said it only helps with pain symptoms not numbness.

I ended up seeing 3 neurologists over the course of 7 or 8 years trying to find the cause of the neuropathy in my feet. I have pain, burning, and numbness in both feet, and after who knows how many tests( EMG, conductivity, blood, biopsy) no cause could be determined.
So after all that time and money spent, I was given the diagnosis of idiopathic poly neuropathy. Lucky me. I'm taking 3600mg of gabapentin and 1200mg of ALA to try and dull the pain.

Thought I would share this upcoming webinar - looks to be interesting for a lot of us with idiopathic neuropathy.

All in the family: Update on hereditary neuropathies and treatments
A Foundation for Peripheral Neuropathy webinar
Thursday, February 05, 2026 - 1:00 PM Central Standard Time

In this webinar, sponsored by Alnylam, will explore how changes in genes can lead to inherited neuropathies. Neurologist Dr. Amanda Peltier, MD will explain common genetic changes, what genetic testing is, and how results can help patients and families make informed choices. She will also share updates on current and new treatments, with a special focus on hereditary ATTR amyloidosis. Sean R., who lives with hereditary ATTR amyloidosis, will share his personal journey and what he has learned along the way. The session will end with a live Q&A.

Can't attend live? Register to get the recording link sent to you via email after the program, or watch for it on our website.
Register here: https://event.on24.com/wcc/r/5208110/C917660E597C4885550CCE5D458F5196

My Primary and Neurologist only did the limited studies as well. I can't get them to do or look for other potential causes. I'm at a loss, went from only burning feet 2 years ago to needing a PCA and a steady 8/10 pain now. Heading for a wheelchair and not being heard.

@cynbell Then ask for a referral to see another neurologist, I ended up having to see 3 doctors before finding one who'd look for the root cause of my neuropathy.