Neuropathy: What works and what are scams?

Thank you so much for posting this I think everything you posted You must be some form of mind reader because I don't have one comment and that's ditto I suffer everyday and I'm getting ready to go to Mayo's on the 20th I'm going to have my possibly well it'll be worse than that but I'm going to have a fourth shoulder replacement and I broke my humerus bone over a year ago and I've had nothing done to it So my arm used to say in my referring surgeons words a mess! That being said I really believe that times minorothy and my feet out overshadows the pain in my shoulder and my shoulder looks like outside of an alien movie! Hopefully we can find some relief somewhere along the line cuz mine is horrible!

I am so glad you asked this and want to see all of the responses

I had a doctor I in IU MEDICAL. Say B6 wasn’t good for neuropathy
I only take B12 now
But this is the problem one doctor say this another disagrees
But I still only do B12 and vitamin D

I have had PN for 12 years. It began shortly after a rear end crash in my car, although at the time I also had symptoms of high blood sugar... not in the high, pre-diabetic range, but close enough for me to be concerned about working at lowering A1C and glucose. As I went about seeking cause and treatment, I have done all the usual things. This PN might be called "a blessing in disguise," for my overall health, as I have exercised more and have taken strict control over my diet. I have tried Gabapentin & Lyrica, with no improvement in my symptoms. I may have arrested the progress of my pain and numbness, which is now limited to my feet, toes, ankles, and lower legs and does not seem to be worsening or spreading. What I really want is to be sure that I have been tested for all possible causes. I have too often been discharge with the "idiopathic" "diagnosis." I idiopathic is NOT a diagnosis. It is an easy way for a doctor to say there is nothing that can be done. I need a 'point guard" who will take the trouble to coordinate the analysis of my blood tests, MRIs, and Xrays. I have this stubborn idea that there is a reason/cause for everything, if only a person with PN (or any condition, for that matter) will take the time and effort to not give up until the CAUSE is found. Any leads, both for solutions or dead ends, will be appreciated. I sound cynical, but it's really that I am totally frustrated with the time, effort, money, and anguish I have spent spent on the condition, with very little to show for it. Thanks!!!

Welcome @1938altucci, I've had my neuropathy symptoms almost 40 years but never worried the first 20 because it was just the toes feeling a little numb/tingly. Then when the symptoms started progressing and I had a little numbness and tingling above the ankles I went on a quest to get a diagnosis looking for a specific cause. Sadly there was no magic bullet at the end of the road when I received my idiopathic small fiber peripheral neuropathy diagnosis at Mayo Rochester and got the same answer as all my PCPs throughout the years for a treatment - there isn't any medication that will help with the numbness. It's only used to address pain symptoms. That's what brought me to Connect when I started searching for answers and learning more from others shared experiences.

A few discussions you might find helpful on your journey:
--- Neuropathy 101 - Knowledge is power?: https://connect.mayoclinic.org/discussion/neuropathy-101-knowledge-is-power/
--- Recently diagnosed with Small Fiber Neuropathy - so many questions:
https://connect.mayoclinic.org/discussion/recently-diagnosed-with-small-fiber-neuropathy-so-many-questions/
I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. A few years ago I made some lifestyle changes to see if I could help reduce the numbness I have in my feet. Since I've been in the pre-diabetic category most of my life and it runs in my family, I've always been worried about getting diabetes but it's never progressed that far. I recently learned about the Metabolic Syndrome and most doctors don't mention it but I fit that category as do most people that are pre-diabetic. So, I started a low carb healthy fats and intermittent fasting diet. It has helped me lose a lot of weight and feel better but the jury is still out to see if it will help my neuropathy. Here's more information on the Metabolic Syndrome if you are interested:
-- The Metabolic Syndrome and Neuropathy: Therapeutic Challenges and Opportunities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3881591/
-- Metabolic syndrome as a risk factor for neurological disorders
https://pubmed.ncbi.nlm.nih.gov/21997383/
It's good to hear you started making some lifestyle changes. You won't regret it. Learning as much as you can about neuropathy and the available treatments that might help is the best suggestion I have and it seems like you already have a great start.

Did you have any traumatic injuries associated with the rear end car crash that could have damaged nerves in the spine or other areas?

Has anyone come across the advert for a drug called Lysozyme?This drug is being advertised on Facebook. It is supposed to cure neuropathy. It’s the same old story, the ingredients are found on a remote island called Acaria where neuropathy is none existent. The advert is selling the Protocol on the ingredients and how to use them. The cost is approximately £30. Please post if you know about it.

I cannot find the product you mention but Lysozyme itself is a naturally produced compound. I personally don’t want to supplement any of it based on this: https://www.science.org/doi/10.1126/scitranslmed.aav4176. Apparently it triggers neuropathic pain.

@bigjohnscho It helps a lot if you begin with the caveat "There is currently NO cure for neuropathy."
So, if someone promises one, it is a big RED flag.
Second, ads on Facebook are notoriously poor sources for medical assistance or advice. If you want better info, stick to a reliable source like Mayo or another site specializing in neuropathy treatment.
Finally, nobody would love a REAL CURE more than people suffering from a condition - if you don't see it on a neuropathy site, it probably isn't true.
Sue

John, thanks for your response. As I said earlier, I have not given up hope in finding the root cause. However, that doesn't mean I haven't tried to be a healthier person. I research this condition on a regular basis. It seems the cause is either orthopedic or metabolic. My condition, I believe, falls into both categories. It is possible that my car accident resulted in a vulnerability not present before the accident. The orthopedist I saw said the MRI showed an impingement in my sciatica. I do have problems with my lower back when I'm lifting, etc. I have also had blood work that shows marginal for some tests. Your input would be helpful to me. Is it worthwhile to continue to seek out the root cause, or should one resign himself to the condition and simply do the best to live with it?

Hi - & @johnbishop - I saw my primary Friday and was talking about the increased numbness & tingling I am experiencing in one side - she raised the possibility of neuropathy - will be seeing my chiro, ortho and pain docs later this month & see if they concur...in spite of years on Connect it never occurred to me - DUH.
Stay tuned for updates.
Sue