Hi All: I am a 68 year old male and believe I have been suffering from peripheral neuropathy since I have been about 15 years old. At age 27 all hell broke loose with numbness, burning skin, vibrating sensations, and a bout of optic neuritis. At one point I was diagnosed with MS by an opthaloneurologist. Back in 1984 I did some research and went on the Swank Diet--less than 15 grams of solid fat per day and daily tablespoon of cod liver oil. Over time, my symptoms subsided and I was able to carry on with a normal life with only occasional episodes of burning skin. I saw other neurologists but all doubted the diagnosis of MS.
What got me through the rigors of Swank diet of limiting red meat and less than 15 grams of solid fat daily was sugar. I drank lots of Coca Cola. Anywhere from 6 - 10 12 oz can daily. In 2017, I developed Meniers Disease and about 2018 I began to develop a tingling/numbness/burning in my left small toe that was made worse by hot baths and showers. I thought that MS had returned. In early 2023 that tingling and burning sensation had spread to both feet and I was again developing burning sensations on my arms, legs and a crawling sensation on my face.
At this point I began to suspect that my issues were not MS and more related to PN. A neurologist who listened to my story thought the same. He ordered MRI of my brain and did skin biopsies. The MRI showed no evidence of MS but the skin biopsies confirmed SFN. Subsequent tests showed no assignable cause for SFN. So I am one of the unlucky (or maybe lucky) to have idiopathic SFN. Even though my SFN was idiopathic, many idiopathic SFN turn out to be eventually be type II diabetes. And in my case, because I consumed so much sugar, I suspected this might be the case with me even though A1C, fasting sugar, and insulin levels were all within normal ranges.
For the past two years I have done the following: 1) drastically reduced carbohydrate consumption--currently at a target level of 50g/day, 2) Mediterranean Diet, 3) 4000 mg/day of Omega 3 Carters Fish Oil, 4) 2000 mg/day of sublingual vitamin B, 4) Daily Hylands MagPhos, 5) 250 minutes per week exercise (40% spin bike, 40% rowing, 20% strength training). I am pleased to report that burning skin/tingling/numbness has been significantly reduced. Also, while my sugar results are still normal, I have improved results of A1C is now 5.1, fasting blood sugar is 83, and fasting insulin levels are at 15. I should also add that over the two year period since adopting this regime I have lost 33 lbs going from 183 to 150 lbs. Currently, I am experimenting with 1 serving per day of unsweetened cocoa powder and unsweetened 100% cocoa chocolate bars to see if I can improve things further by improving capillaries heath. Also, I have experimented with 5 servings/day of matcha green tea. But that seems to make things worse.
Hope my experience helps others.
Welcome @dgbarar, Thanks for sharing your experience with what has helped you. I know it had to have been difficult for you to deal with the symptoms at age 15 trying to understand what's going on with the numbness, burning skin and more. I've been fortunate not to have to deal with the burning or pain but have been dealing with the numbness since my mid 50s or so starting with the toes. I've only had the numbness with some tingling. I shared my neuropathy journey in another discussion here - https://connect.mayoclinic.org/comment/310341/. Since my diagnosis was also idiopathic I've often thought it may be related to my being in the pre-diabetes category most of my adult life. It's only since 2018 that I started focusing on eating healthier and eliminating as much sugar and carbs as possible for me since I do like treats once in awhile. What really helped me was learning more about the metabolic syndrome and learning about intermittent fasting and low carb eating. There is another discussion on that if you are interested.
-- Low-carb healthy fat living. Intermittent fasting. What’s your why?
https://connect.mayoclinic.org/discussion/low-carb-healthy-fat-living-intermittent-fasting-whats-your-why/