Idiopathic Polyneuropathy: My endless journey to a near-diagnosis …

"Besides, got enough going on just trying to keep my balance! "
Very true! I have a tough enough time squeezing into each day those few strengthening exercises that do seem to help with my PN. I'm not about to add concern about my every-three-or-four month dizziness to the list. ––Ray (@ray666)

Hi, after many years of slightly high blood sugar I am suddenly pre diabetic. My a1c was normal but my glucose high for many years. I was told my neuropathy could only be caused by full blown diabetes. I went to a new neurologist this week who told me that neuropathy starts before you actually get diabetes. That makes a lot more sense to me as it seemed a big mystery to my doctors as to why I have neuropathy with a normal a1c.

Hi, Martame (@martame)

One of my closest friends has the combo of PN and diabetes. I'm not sure in his instance which came first, or, for that matter, if even he knows. Several years before I was diagnosed with PN, I was told my labs indicated that I was pre-diabetic but not to be concerned ("many people are pre-diabetic"). Subsequent labs showed that I had a low red blood cell count. My PCP sent me to see a hematologist. After yet more blood work, the hematologist seconded what my PCP had said a few years earlier, that I was "officially" pre-diabetic, but just barely, and I shouldn't be concerned. To this date, no link to my PN has ever been suggested.

Ray (@ray666)

Ray, ran across this fairly incredible source (NIH) re: pre-diabetes.
"It is now increasingly being appreciated that a substantial proportion of subjects with prediabetes may exhibit peripheral neuropathy and/or neuropathic pain. The reverse is also true, inasmuch as examining patients with idiopathic peripheral neuropathy will frequently reveal prediabetes. In the general population, the prevalence of neuropathy in prediabetes is intermediate between overt diabetes and subjects with normoglycemia. This prediabetic neuropathy is, generally, milder in comparison to diabetic neuropathy and mainly affects small fibers mediating sensory function."
Bob

I use the Voxxlife Liberty patch to help me with my balance. It isn't a marketing scam. It really helps me to walk without stumbling.

Is Voxxlife Liberty OTC or prescription? I have been dealing with balance/mobility issues for several years (myelopathy) with no relief from the numbness (toes to waist). They have ruled out just about everything(including MS) based on my symptoms, scans, and blood workups. (I was misdiagnosed with Neuromyelitis Optica Spectrum Disorder 2 years ago, undergoing 4 sessions of rituxan infusions; a return visit to Mayo refuted that diagnosis, but they could not figure out the cause of the spinal lesion discovered 6 years ago). Mayo neurologists tried various medications, PT sessions, and injections (most recently botox injections in right leg 5 weeks ago with no improvements in symptoms). I return to Mayo-Rochester (MN) in a month for a consult with doc in the spasticity clinic. I have posted here before in hopes of trying to come up with a any kind of solution, as my symptoms continue to worsen (I now use a walker to carry on with my daily activities). Suggestions of any kind are more than welcome. Thanks.

Hi Ray, unfortunately, "idiopathic polyneuropathy" is not a genuine diagnosis; on the contrary, it means "we don't know what it is." Upwards of 30 per cent of those with idiopathic (unexplained) PN are ultimately shown to have some degree of pathological glucose intolerance, according to some studies. When you have PN plus notable spinal issues the diagnosis can become even more difficult. It is possible the two are linked or that there are multiple, separate causes. If your PN has developed distally (in the extremities) and symmetrically and then spread again in a symmetrical pattern it is likely that something different from or in addition to spinal issues is at work. I am in the same situation, trying to sort this out. You might also consider adding acetyl-L-carnitine to your supplement regimen.

It is over the counter. Look it up at Voxxlife.com. I believe I first found it mentioned on this site. They would like you to become a distributor which makes it seem like a scam, but it isn't. It has helped me a lot. If it doesn't work for you they will return your money if it is no more than 30 days after buying. They also sell socks and other stuff. The patches work best. I make one last for 48 hours. I write on the patch the day I apply it. Amazon sells something called VoxxLife socks but it isn't the same thing.
I recently hurt my hip and had to have a steroid infusion which worked well. I wore my patch then to, and it helped with balance and pain control.

Hi, Bob. Sounds almost like a conspiracy: two conditions walking hand-in-hand. It appears to make great sense to pay attention to both. For years, my balance "issues," out-of-range lab numbers, on & off gastrointestinal difficulties, etc., were always considered as unrelated problems. Now I wonder: Were they? ––Ray