role of ongoing medical testing for idiopathic peripheral neuropathy

@njed ~ Around 2010, perhaps earlier, I started noticing the feeling that my sock was wadded up under my left big toe joint. I started getting electrical-type sensations in my toes, and burning in the ball of my foot. My primary and podiatrist both termed it "metatarsalgia" and recommended nothing other than orthotics. It kept getting worse, progressing to my right foot. In 2017, I asked for a referral to a neurologist who had an MRI done which showed a mild disc bulge and possible pinched nerve somewhere around L4. He said it could be the cause of my "neuropathy", but because I had no back pain, he said there was no treatment for it.
We moved out of state in 2020, and my new primary referred me to a neurologist who also acted like I was wasting his time. He said I needed to be on Gabapentin and that he didn't need to see me further. I tried it at a low dose for a month and said "no thanks." My primary asked me to try Lyrica, and I thought I'd hit the jackpot! It worked for about 3 years and then I needed a bigger dose. I'm currently at 75mg 3 times a day - and I'm having incredible burning, stabbing, electric shocks, and numbness. I've read a lot of posts in the neuropathy group of people taking low dose Naltrexone (between 1-5mg once a day) and having incredible results with it reducing all of those symptoms except for numbness. So I found a "compounding pharmacy" here in town and am picking up a 30-day supply later today ($55). My primary says he actually thinks this might work! It's worth a try, especially if it means I can quit taking Lyrica with all of its side effects! In my opinion, it's always good to ask questions and get second and third opinions if you have to. My brother always says, "Remember - doctors are 'practicing' medicine - they don't have all the answers." I guess that's true to a large extent. But with all of us in the "chronic pain" phase of neuropathy, it's good to have hope that there are doctors out there searching for ways to help us. I've also discovered on this 15-year journey that different things work for different people, whether it's medication, PT, exercise, topicals, and even surgeries. I wish all of us on this journey that seems to have no cure the very best. Keep searching and asking questions and sharing information. At least we can maybe help each other stay positive. God bless us all!

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

@brennankb55

Please let us know how the LDN works for you. Who prescribed it for you? I was on gabapentin (1800) and it was causing tremors so I weaned off. Recently, I asked about LDN when I had my neuromuscular neurology appointment; he would not prescribe because he only prescribes what is currently recommended and evidence based?! He prescribed Lyrica instead. I have been diagnosed with Small fiber neuropathy that came on very rapidly in 2024.

I have had idiopathic PN for about 10 years. I am 81. In the beginning I had the entire gamut of tests, including a positive skin biopsy. A few years later, my University neurologist contacted me to suggest a battery of new tests only offered by select institutions. They were all negative.
Personally, I don't really see the need for follow up. Unless there is a new treatment (unlikely in my lifetime) anything done will just be a confirmation of what I already know, perhaps with a little more information. Standard advice is to be seen periodically if the condition is progressing (mine is), particularly if a purely sensory condition is developing autonomic symptoms (I think mine is). Unfortunately, even with these new symptoms, there's still no treatment other than supportive (PT, devices like walkers, etc.). If these become necessary, then follow up is needed.
For me, it doesn't feel worth the time and energy, but opinions certainly vary. This is a particularly weird disease.