Many neuropathy issues, so why so few doctors who know?

@cwloeffler I have the same diagnosis that you've been given, and I've talked to my doctor about acupuncture more than once. He's always told me that at best it's temporary, along with not being covered by our medical insurance.
Good luck.

I also have neuropathy that the Neurologist says they can’t find a cause for. I had the EMG, cervical, thoracic and spinal MRI’s, and genetic testing with no answer to the cause. Everything that was done was prefaced with, “we don’t know if this will show anything but it may”. Of course I wanted answers so I tried most things however drew the line at the nerve biopsy.

Both my feet are getting more numb. My problem started 3 years ago. I could not feel my feet when I was in a store shopping. Directed customers out of my path since I knew I was going to fall but didn’t know when and was surrounded by glass shelves. Made to front of store near check out and fell.
The numbness was temporary however would come back without warning. Had excruciating sciatic nerve pain that was relieved by Gabapentin. MRI showed severe spinal stenosis. Had back surgery without any improvement of the numbness in the feet. This is such a maddening problem. I am a retired nurse and my brain is trying to think of a way to improve the neuropathy. What about hyperbaric oxygen? What about renal dialysis? Are there any studies being done?

I also have neuropathy that the Neurologist says they can’t find a cause for. I had the EMG, cervical, thoracic and spinal MRI’s, and genetic testing with no answer to the cause. Everything that was done was prefaced with, “we don’t know if this will show anything but it may”. Of course I wanted answers so I tried most things however drew the line at the nerve biopsy.

Both my feet are getting more numb. My problem started 3 years ago. I could not feel my feet when I was in a store shopping. Directed customers out of my path since I knew I was going to fall but didn’t know when and was surrounded by glass shelves. Made to front of store near check out and fell.
The numbness was temporary however would come back without warning. Had excruciating sciatic nerve pain that was relieved by Gabapentin. MRI showed severe spinal stenosis. Had back surgery without any improvement of the numbness in the feet. This is such a maddening problem. I am a retired nurse and my brain is trying to think of a way to improve the neuropathy. What about hyperbaric oxygen? What about renal dialysis? Are there any studies being done?

Hello @smangione05, I would like to add my welcome to Connect along with @pauldandurand and others. It can be maddening to say the least but it does help to learn as much as you can about the condition and treatments that are helpful that may provide some relief. Here is a recent webinar from the Foundation for Peripheral Neuropathy that might be helpful.
-- Shedding light on idiopathic PN: Recent advances in understanding: https://www.youtube.com/watch

@smangione05
Hi, I'm sorry to hear about your issues. Would you like me to do some research for you using an advanced AI model? If so, let me know and I will send back some questions.

@smangione05
Hi, I'm sorry to hear about your issues. Would you like me to do some research for you using an advanced AI model? If so, let me know and I will send back some questions.

If anyone finds any relief for neuropathy, please share

Ok, here it goes. Sorry it's so long, but this is what the agent gave me after I shared you post.

1. What exactly was your spine surgery, and at what level or levels?
2. What symptoms was the surgery intended to treat: the sciatica, the foot numbness, weakness, spinal stenosis, or something else?
3. Did the sciatic pain improve after surgery? Did anything else change afterward?
4. Is the numbness now in both feet equally, or did it start in one foot and spread to the other?
5. Exactly where is the numbness: toes, soles, heels, tops of feet, ankles, or higher up the legs?
6. Is it only numbness, or do you also have burning, electric pain, pins and needles, cold sensations, hypersensitivity, or a feeling of walking on cushions or rocks?
7. Does standing or walking make the numbness worse, and does sitting, bending forward, or lying down make it better?
8. Do you have any weakness, foot drop, trouble climbing stairs, difficulty standing on your heels or toes, or problems moving individual toes?
9. Is your balance worse in the dark or when you close your eyes? That can suggest loss of large-fiber proprioception.
10. What exactly did the EMG/NCS show? Were the sural and superficial peroneal sensory responses normal or reduced? Did it show radiculopathy, axonal neuropathy, demyelination, or was it completely normal?
11. Have you had a skin punch biopsy for small-fiber neuropathy? If not, was it ever discussed?
12. Have you had autonomic symptoms such as abnormal sweating, dizziness when standing, bowel changes, urinary problems unrelated to the spine, or abnormal heart-rate responses?
13. What blood testing has actually been done, especially B12 with methylmalonic acid, HbA1c/fasting glucose or glucose-tolerance testing, serum immunofixation/SPEP, free light chains, thyroid, folate, copper, B6 level, kidney and liver function?
14. When you say genetic testing, which genes or panel were tested? Was RFC1 repeat-expansion testing specifically included?
15. Do you have diabetes or prediabetes, kidney disease, autoimmune disease, cancer treatment history, significant alcohol exposure, or long-term use of supplements containing vitamin B6?
16. Any history of bilateral carpal tunnel syndrome, unexplained weight loss, heart disease, autonomic problems, or family members with neuropathy?
17. Has the numbness progressed steadily over three years, or does it come and go in episodes?
18. Has anyone examined vibration sense, joint-position sense, pinprick, temperature sensation and reflexes in a detailed neuromuscular examination?
19. Has anyone considered that you might have two separate problems, such as lumbar disease plus an unrelated peripheral neuropathy?
20. Have you been evaluated at a dedicated neuromuscular or peripheral-neuropathy clinic, rather than only by a general neurologist or spine specialist?
If she answers those, particularly #1, #2, #5, #7, #10 and #13, we could probably narrow the possibilities considerably.