Have you tried the new Protocol 525 product for neuropathy relief?

Has anyone tried the cream? Surterra tincture oil.

Hi Jeff @jeffrapp, I had thought about getting retested for my neuropathy but did not follow through. My Mayo neurologist didn't use a punch biopsy for my diagnosis. I had a couple of EMGs and some labs along with a physical exam when he diagnosed me with idiopathic small fiber PN. I did think about seeing if I could get another EMG to see if there was some difference but it's a matter of paying for the tests and getting one scheduled so I haven't pursued it anymore. I agree that it would confirm my subjective feelings quite a lot if the test confirmed improvement. After this COVID-19 situation improves I may talk to my primary care doc to see if I could schedule something that would be covered by my insurance. I missed my annual exam due to COVID so will add it to my list of questions for my doctor. Thanks for the suggestion!

Hi John, I was under the impression that SFN was not detectable by EMG; that is what I was told since my 2 EMG tests were negative. Further tests showed nothing so my neurologist assumed by my symptoms I had idiopathic SFN, stating that the treatment would be the same no matter what. Do you know which test specifically showed you to have SFN? I did forego the skin biopsy which she has since offered to do.

Hi Helen @helennicola, Actually the EMG is one of the tests for diagnosing peripheral neuropathy. I had nerve damage for 20+ years before seeking a diagnosis because I only had numbness and then when talking with the doctors early on I was told if they ran tests and found I had nerve damage there was nothing they could do. Then when I finally "needed" to know and setup an appointment with a neurologist, he setup several appointments including labs, MRI and EMG then he examined me and diagnosed me as idiopathic small fiber PN. And confirmed my biggest fear...there was nothing he could do for the numbness. He also took pictures (with my permission) of my "hammer toes" which he said were typical of someone with peripheral neuropathy. That's what brought me to Connect and learning how to advocate for my own health and learn as much as I can about my health conditions.

Neuropathy Commons has some good information on diagnosing neuropathy and the different tests here:
-- https://neuropathycommons.org/neuropathy/tests-diagnosing-small-fiber-polyneuropathy

Matthew B. Jensen. Assistant Professor of Neurology, University of Wisconsin has a YouTube channel with a lot of really good information in easy to understand language in most of his videos: https://www.youtube.com/channel/UCJaXGRxxjnF2mvLiOFmmHLQ

Great Picture with horse ... I am former senior equestrian.
I am having a terrible time with neuropathic/neuralgia pain of right superficial abdomen adjacent to umbilical area and going laterally. I went through this 10 years ago on the left side. I tried Lyrica and gabapentin ... in a fog. I tried amitriptyline ... in a fog... not much help if at all. I am using lidocaine 5% patches bid and ice packs. What is the difference in ALA and R-ALA. I am under care of Endo MD for diabetes, Primary care MD, and whole regimen of doctors. Just seeking comments and ideas.

sounds like shingles

R ALA stand for R Alpha Lipoic Acid. Here is what it says on the first website I looked at:

R-Lipoic Acid Details
Alpha-lipoic acid occurs naturally as a 50/50 mixture of R-lipoic acid (R-ALA) and S-lipoic acid (S-ALA). R-lipoic acid by itself functions as an essential cofactor for many enzymes involved in energy production.* It also has characteristics, including significant antioxidant effects, that contribute to liver, brain, nerve, and eye health.* Studies indicate that supplements containing only R-lipoic acid appear to be better absorbed than supplements containing both R-lipoic acid and S-lipoic acid, with results showing twice as much ALA appearing in the bloodstream after an oral dose of R-Lipoic acid.* Because R-Lipoic acid is the form best utilized by the body, Thorne provides R-lipoic acid bound to sodium, providing it in its most stable, absorbable form.*

Alpha-lipoic acid, also known as thioctic acid, was discovered in 1951 as a molecule that assists in acyl-group transfer and as a coenzyme in the Krebs Cycle. In the 1980s, the scientific community realized that alpha-lipoic acid is also a powerful antioxidant.* What sets ALA apart from other fatty acids is that it's an antioxidant in both fat- and water-soluble environments, and it's also an antioxidant in both its oxidized and reduced forms.* This is unlike vitamin C, for instance, which is a water-soluble antioxidant, as well as vitamin E, which is a fat-soluble antioxidant. ALA also increases intracellular glutathione and CoQ10 levels.* Its other mechanisms of action include promoting normal protein glycosylation and inhibiting the enzyme aldose reductase, which in turn inhibits conversion of glucose to sorbitol.*

Hello @alglenn, Welcome to Mayo Clinic Connect. You ask a great question about the difference between ALA and R-ALA. The R-form of alpha-lipoic acid is the active, natural form. If you look closely at the ingredients for most ALA supplements you will find that they contain a large amount of S-ALA (synthetically manufactured and inactive form of ALA). Here are a few references that you might find helpful for learning more about ALA and R-ALA.

ConsumerLab.com - R-Form Alpha-Lipoic Acid & S-Form Alpha-Lipoic Acid:
-- https://www.consumerlab.com/answers/i-heard-the-s-form-of-alpha-lipoic-acid-is-bad-for-me-why-is-it-in-my-supplement/S-Alpha-Lipoic-Acid/
(R)-Lipoic Acid: Unique ‘Mitochondrial Antioxidant’ Fights Premature Aging:
-- https://nutritionreview.org/2019/07/r-lipoic-acid-unique-mitochondrial-antioxidant-fights-premature-aging/
Linus Pauling Institute » Micronutrient Information Center -- Lipoic Acid:
-- https://lpi.oregonstate.edu/mic/dietary-factors/lipoic-acid

Here is some information that I found on that may provide information to help.
Abdominal Wall Pain: Clinical Evaluation, Differential Diagnosis, and Treatment: https://www.aafp.org/afp/2018/1001/p429.html

There is also another discussion on Connect you may want to read through where other members are discussing similar symptoms.
Has anyone been diagnosed with Abdominal Wall Pain: https://connect.mayoclinic.org/discussion/has-anyone-been-diagnosed-with-abdominal-wall-pain/

You mentioned the abdominal pain - neuropathic/neuralgia. Did the doctors give you a specific diagnosis?

Can you explain the 525 protocol?

@bustrbrwn22, The 525 Protocol is a product that includes different supplements packaged together by a non profit 501c3 group to help treat the pain symptoms of peripheral neuropathy. I have been taking the original protocol since 2016 and switched to the new 525 when it became available early this year. I only have numbness but feel it has helped me some and has slowed or stopped the progression of my idiopathic small fiber PN.

You can learn more about it and get support for the 525 Protocol on their Facebook page. There is a link to join the Facebook group on their website to order the product here: https://solutions2pnpd.com/ There is also an instruction sheet in PDF format that compares the old protocol with the new 525 - https://solutions2pnpd.com/wp-content/uploads/2020/07/NEW-Instructions-525.pdf

There are members taking some or most of the supplements included in the 525 Protocol who can share what they take.