Neuropathy treatments: How to avoid scams?

@jakedduck1 Oh, you'll know! My PN is definitely progressing. A year ago I could walk fairly well. Then about 6 months ago, I noticed that walking a straight line had become more difficult. Today, Walking takes all my concentration. I feel like I am going to fall with each step. A cane is on the horizon... unless I can exercise myself back to better balance.

@johnbishop
Out of curiosity I think you said you were diagnosed with SFN? SFN is diagnosed by skin punch biopsy and large fibre is detected by EMG and or nerve conduction study. Or so I was told but I was diagnosed with large fibre sensorimotor polyneuropathy not too long ago with both emg and nerve conduction. I wander if that explains the numbness, balance problems as those are more large fibre and small is known for pain. I alway wandered why I didnt have pain but I initally wasnt told I had large fibre but just the blanket term neuropathy. I am curious as I know a person can have both small and large but always wandered if once diagnosed with large they would even bother to check for small? I checked on google and it seems to correleate:

“Standard EMG and NCS tests only evaluate large nerve fibers and large motor or sensory units. Because small unmyelinated or thinly myelinated fibers do not significantly impact large muscle or nerve electrical conduction profiles measured by these needles and surface electrodes, an SFN patient typically has a completely normal EMG/NCS result“

I should add that I have had two emg/nerve conduction studies a year apart. It has significantly progressed since the two studies and until today. I have them both sitting beside my computer and the second one shows absent reflexes. I wish I had been given more info after the first study but all I got was “there is nothing that can be done”. Then my primary wasnt much help either with explaining other than prescribing gabapentin which did nothing…..which got me looking things up and leaving me confused as to why I dont have pain. I saw a neurologist a year later after the second emg. I just remembered this thread is about scams though so I will stop here.

@megidigo I had the numbness that started in my toes and progressed into my legs just below the knees for 40 years before seeking a diagnosis, mainly because every primary care doctor I had told me there is nothing they can do for the numbness. Then in 2016 my PCP gave me a trial of Gabapentin which I only took for a week and it did nothing. She discussed it with her other cohorts at my Mayo Family Clinic and they told her the Gabapentin only helps with pain so she setup an appointment for me with a Mayo Rochester neurologist. I had an EMG/NCS and a physical exam and was diagnosed with idiopathic small fiber peripheral neuropathy without the gold standard skin punch biopsy. The neurologist also asked me if he could take a photo of my "classic" hammertoes which many neuropathy patients have. He wanted it for an upcoming presentation he was putting together.