← Return to Member Neuropathy Journey Stories: What's Yours?

Discussion
John, Volunteer Mentor avatar

Member Neuropathy Journey Stories: What's Yours?

Neuropathy | Last Active: Nov 23, 2025 | Replies (656)

Comment receiving replies
Profile picture for John, Volunteer Mentor @johnbishop

Welcome @sdiane, I felt the same way for a long time, sort of "what's the use" but since joining Connect back in 2016 and learning what other members have shared, I feel it's better to seek a diagnosis even if you may end up with no new treatment options. Maybe it's just the comfort of knowing and certainty. I had always leaned a little towards something related to diabetes causing my neuropathy even though I've never been diagnosed with diabetes. I struggled with weight most of my adult life and only within the past 6 years got it under control. That's when I learned about the metabolic syndrome which was never mentioned by any of my primary care doctors who kept telling me I was pre-diabetic.

I shared my weight loss journey in the Low-carb health fat living. Intermittent fasting. What's your why? discussion here - https://connect.mayoclinic.org/comment/336050/. If you want to learn a little more about the metabolic syndrome and it's connection with neuropathy, here are some references I've found helpful:
-- A comprehensive definition for metabolic syndrome
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2675814/
-- 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/
What's the symptom that bothers you the most? Have you found anything that provides some relief?

Jump to this post


Replies to "Welcome @sdiane, I felt the same way for a long time, sort of "what's the use"..."

Hi, John, thanks for your reply! This is great to have a supportive community.

I wonder about the metabolic piece as you mention, because my dad and sister both became diabetic around my age. I did feel better when I was on Paleo (for two years) but now I try to just eat healthy and low sugar/low carb. I could improve that though. What was bothering me the most when symptoms started I had horrible painful leg cramps, mostly at night. It's awful to wake up suddenly in intense pain. Then I started taking Magnesium which stopped the cramps but I feel like they are "trying" to come on. I am so worried they will come back. Now I am left with pins and needles as well as cold rushes on and off. Honestly what bothers me the most is I feel like there is a reason, an answer as to why this is happening but medical professionals kind of "blow me off." The Vascular Surgeon said it wasn't related to PAD, my Endo said "just take Vitamin B and you will be fine" and the primary said "your blood work is perfect." I also have fatigue and some muscle weakness. I just don't feel good, basically.
I also have Renaud's and Neurogenic Cardio Syncope. No idea where all of this comes from. No one in my family has any of these conditions or a Thyroid problem (Nodule). Seems like my system is fighting itself.
I looked into the Protocol you mentioned and I get a little wary of taking such high doses of supplements as I don't want to make things worse. There has to be a way to feel better. I also have mysteriously gained 6 pounds in 6 weeks. I know that doesn't sound like a lot but it's never happened before. Something seems wrong but the medical community doesn't seem to take me seriously.

Hi John, I was just scrolling and came across this old post . My GP keeps hinting that I am borderline Type 2 and like you I have always suspected he is probably right. I am not taking anything for my PN but am tempted to try R- Lipoic acid. Is it generally accepted that RALA is a good idea to try