role of ongoing medical testing for idiopathic peripheral neuropathy

Does mayo recommend Dr HO’S motion ciser v2 for swelling of ankles and legs

@brennankb55
We can be glad if not joyous that karma in medical practice has not
been deemed applicable for centuries. But the body is a complex array of past present and future. May yours be brightened and made void of any harshness as you live and find contentment.

@patevalee what is that?

@jankavs ~ Will do! My primary who's a D.O. gave me the prescription after I asked him for one. He initially prescribed 50mg and I had to explain the dosage differences and what they're used for. He quickly rewrote the prescription after I located a compounding pharmacy. He's had me on Lyrica the past 3+ years, but he is very intrigued by LDN and said "this may actually work!" I'm seeing a neurologist in June, so I'll be curious what he says about it. Most doctors just default to Gabapentin or Lyrica, usually at the instructions of the hospital administrator. My primary actual confessed that he routinely advises his patients to take Vitamin D3 - even though that's not a protocol the hospital approves of! He said it's more important to him to do what's right for his patients! I totally respect him for that move!

Thank you for responding. My PCP literally told me she will take care of basic stuff, but leave everything to specialists (like nothing is connected). There is no way she will prescribe LDN. I have that RX for Lyrica from my neuro, but so hesitant to take it because of experience on gabapentin. I hope the LDN works well for you. Someone on the SNF support group told me about it months ago and said it was working very well for her. Hope to find a new PCP soon.

@jeffrapp

Your characterization of PN being a "weird disease" is spot on. My neuropathy, according to my neurologist is related to celiac disease for which I tested positive this past July. I have been on strict gluten free diet since then. Until a shin shave biopsy (which I did not need as lesion was not cancerous) I was doing okay. Now I have chronic shin pain and recent ultrasound showed no abnormalities. I recently had dental work done and I am ultrasensitive to that too. I have been doing PT but 90 minute sessions are too much. I know my PN has gone above my feet to shin but it is very intermittent. I wish you peace of mind--that is very important in dealing with conditions like this.

@jankavs ~ I'm sorry for the lengthy delay in responding. I had a laminectomy (L1-L5/S1) on 5/26 and have been recovering well through physical therapy. Meanwhile, I'm back on LDN at 2.5mg. I plan to go up to 3.5mg when time for a refill. My primary care doctor gave me the prescription at 1.5mg which has to be filled by a compounding pharmacy. I also recently talked with my neurologist about it and said to stick with it because it's definitely helping, with no side effects and is well-tolerated by most people. I initially directed my PCP to a few websites about it because he was not aware of it except in the higher doses to treat opiod addiction. He first gave me a prescription for 50mg and I had to educate him about the dosage! LOL! Anyway, here are the two websites where I found information about LDN and to show that it's being used "off label" to treat the chronic pain of various conditions. You might want to share them with your doctor. I'm on Lyrica as well at 75mg 3x/day. Good luck!
https://www.clevelandclinicmeded.com/showcase/EKCC138/docs/1430_Hill_Dose.pdf
https://ldnresearchtrust.org/

@brennankb55

Thank you for your response. I might have mentioned that my neuromuscular neurologist in Pittsburgh would not prescribe it because he only prescribes what is "standard of care." Whatever...wasn't gabapentin initially for epilepsy? I do understand everyone has a different response to it, but I am curious as to how people are doing on it. I am glad it is helping you.

@jankavs ~ Wow! That's too bad. I wish you could give it a try. I really do notice a difference even at the 2.5mg dose. My feet aren't burning the way they did before, and they aren't keeping me up at night. I've had this painful condition for many years, so I'm thrilled to find something that's working. My neurologist agreed with me taking it, but he deferred to my primary care doctor (an APRN at present) to handle the prescription. He had never prescribed it before either, so I think he's tracking my progress with it as maybe a test case?! That's ok with me. He gave me the picture of the future progression of sfn and what I might expect to happen in time. It's a bleak outlook, but I prefer to concentrate on how I'm doing in the moment, and trusting God with the rest. I wish you well on your journey and pray you find what will work for you. Oh, and yes - the "Gabapentinoids" (including Lyrica and possibly others) are primarily prescribed for epilepsy. They have all transitioned to being approved for treatment of nerve pain. Perhaps it's facility your neuro is affiliated with that has a "mandate" of some kind to the effect of only prescribing what falls in the category of "standard of care." My own doctor clued me in to that a couple of years ago. He asked me if I was taking vitamin D3 and I said I was, every morning. He said, "Good. Keep doing that. I'm not supposed to recommend it per hospital 'policy' but I'm going to because it's best for my patients!" I was so glad to hear that, but sad as well that a hospital could dictate what their doctors could and couldn't do! Again, best wishes to you!

Neurologist can help, but I am trying to find someone who specializes in peripheral neuropathy. Any suggestions how to pursue this? My generalist neurologist did an EMG in early 2026 to provide diagnosis of sensorimotor peripheral neuropathy in both feet. I needed to advocate for myself to get test. Diagnosis addressed mystery symptoms ranging from gritty, lumpy sock feeling to lack of balance, falls, and broken toes. After test neurologist said no further tests, try Gabapentin and PT, come back in six months.