Looking to connect with people who have non-diabetic neuropathy

Posted by Ann broussard @user_ch98d0b5c, Aug 6, 2018

Would. Like to find people with this issue

Interested in more discussions like this? Go to the Neuropathy Support Group.

@inmagic

Oh, I am so sorry!! This comment is for several people here. I have non-diabetic polyneuropathy and a couple of cervical spine fusions, which may or may not be related. I have been treating neuropathy with medications for over a decade, and none of the pharmaceuticals provide enough relief to make it worth the horrible side effects.

I get the most relief from eliminating the foods known to irritate nerves (gluten, dairy, sugar, caffeine, alcohol, brown rice) and taking supplements like (NAC, 5-HTP, Co-Q10, R-ALA, magnesium glycinate) and natural herbal remedies that support and calm the central nervous system and help nerves recover (tinctures of milky oat, ashwagandha, ginkgo, gotu kola, hops, and California poppy).

I use NOW Solutions magnesium chloride flakes for burning in hands and feet and for sensitive, tender areas of skin. Magnesium chloride has a higher magnesium level and is more readily absorbed than the magnesium sulfite of Epsom Salt. The easiest way to use it is by filling a spritzer bottle half full of magnesium flakes and then filling the bottle with room-temperature filtered or distilled water. Spray it on, rub it in, absorb it for 20 minutes, and then rinse it off. The magnesium needs 20 minutes to absorb. After that, leaving it on has very little benefit and is pretty sticky. You can also add magnesium chloride to your bath or a foot soak.

Other things to address the neuropathy include PT weekly (for 13 years), regular chiropractic adjustments (activator method only), and acupuncture. I do moderate exercise as tolerated, use Indica edibles for sleep, and take a very low dose of Gabapentin as needed (100-200mg), and occasionally 5mg of oxycodone when I can't take it anymore.

I am always looking for better tools and have an appointment with another new neurologist next week.

Jump to this post

I have non diabetic neuropathy also and it is getting worse. Prior spin fusions and positive test for SF neuropathy. I am interested in what to do for relief - I have no answers

REPLY

I have non diabetic neuropathy and was excited to see stimulators for feet. Ended up with not one but two scams through NOORO. Reluctant to try another. Has anyone had success with feet stimulators from other companies?

REPLY

I have been through therapy via a local chiroprater whom promotes a comprehensive protocol for PN. Red light treatment, vibrating foot massager, electrostimulation and mega doses of certain supplements have helped noticeably. I have recently started taking supplemental "benfotiamine" which is a sub ingredient in vitamin B1. After only a week, I believe this has already helped. I don't think anything will eliminate or "cure" this malady but there are things that help. BTW, I took lyrica early on; I gained 20 lbs and I didn't think it did anything for the symptoms of PN>

Tim M

REPLY
@kenhassen

Jake’s experience with neuropathy is nearly identical to my own. My problems originated as painful feet during my last year and one half of military service, which at the time was a laugh, since, who has ever heard of an active duty, U.S. Navy Fleet Marine who didn’t complain of sore feet? Although both feet were painful, military orthopedists felt that a screw in my ankle, planted after a previous fracture, now healed, might be contributing to the situation. He attempted to remove the screw, was unable to do so and placed me on pain killers for the remainder of my enlistment and upon honorable discharge after four years active service, was awarded a 20 percent VA disability rating, approximately $120/month. During the year after discharge, the pain started to leave my feet but seemed to travel upward, more of a pinching type pain in my thighs and lower abdomen. I also started to experience constipation, some bladder leakage and intermittent ED. I attributed a lot of this with stress associated with re-acquainting myself with “normal’ civilian life. At this point, I’m around twenty-one years old and married (we’re currently at fifty plus years!), whom has noticed the changes in me that even I have not seen. Before service, I was an expert horseman, skier, long distance bicyclist, etc., but have mostly abandoned these. I came to realize that I unknowingly avoided these because of balance issues I was experiencing, but had learned to accommodate for by avoiding the sports I previously loved. After another six months, I was left almost entirely pain free, but numb from the bottoms of my feet to my knees, numb inner thighs, numbness in fingers and palms of hands, both buttocks, numbness in both shoulders and left side of my face. There was now also a ringing in both of my ears and have developed a severe limp, along with a tendency to trip over my own feet.

Of course, I visited neurologists, through all of this, who insisted on pain medications, even though in reality, I wasn’t in any real pain, and have mostly . They performed nerve conduction studies, several surgical exploratory explorations including carpal tunnel releases to both hands, numerous physical therapy visits and massage therapy all to no avail.

So what was happening and for what reason? I was not, and to this day, do not smoke, no alcohol, no drugs or wacky weed, no diabetes, no hypertension, all of my hematologies and blood chemistries were, and to this day, normal. At that point, I grew philosophical and settled into living my life. My focus was on the fact that I’m alive and will make this work, so I stopped looking for causes and focused on accommodating my shortcomings; until a day in 2015 that I ran across an obscure, previously unknown to me situation regarding the extremely critical circumstances regarding efforts to clean up the toxic water situation on the U.S Marine Corps base at Camp Lejeune, North Carolina, a duty station in which I served during my enlistment 55 years earlier. It seems that between the years of 1953-1987, heavy leakage of toxic chemical solvents and volatile organic compounds had contaminated Camp Lejeune’s drinking and bath in water, in amounts as much as 400 times permitted by the FDA! Among the conditions listed as a result of such exposures to anyone exposed 30 days or longer, were numerous cancers, as well as neurological conditions, including neuropathies, Parkinson’s Disease and ALS! To tell you the truth, even though the PACT Act, signed into law during 2022, admitted to a service connection to approximately 13 conditions, at this point, for many of those affected by those exposures, either through death or decline, had mostly stopped caring about causes long ago…

We’re Blessed,
Ken Hassen; July, 2024

Jump to this post

Ken I am a retired Marine as well. Have you been successful in getting your neuropathy connected to CLNC water? I am going to file for disability and wondering if they will recognize neuropathy?

Dan

REPLY

I am an 85-year-old male with non-diabetic peripheral neuropathy who has alleviated numbness intensity in both feet and legs (mid-calf down) with a daily dose of Super Vitamin B-Complex and 300 mg Stabilized R-Lipoic Acid (Biotin Optimizer. I have read and discounted numerous vitamin, heat, massage, shoe, and magic pill ads but some strange ones were effective for certain individuals. Obviously, we all are on our own to find out what works best because, medically, there is no known cure. On this site, I have seen at least two people who had good results with Biotin (500, 1,000, 10,000 mg doses). My primary approves my trying it so I will try 500 mg for a month and report the result before increasing dosage.

REPLY

I have pain in my calves and feet. I have found that gabapentin and therapy helps some. Good luck to you.

REPLY

Compression socks also help some and staying hydrated helps.

REPLY
@pbarrows

I have non diabetic neuropathy and was excited to see stimulators for feet. Ended up with not one but two scams through NOORO. Reluctant to try another. Has anyone had success with feet stimulators from other companies?

Jump to this post

I have the Accu Relief brand electrical foot stimulator, have had it for several years. Feels good while using it but it has not brought any relief to the foot neuropathy at all. My neuro doctor wrote me a scrip for Duloxetine 6 weeks ago and it has reduced the pain level by 50% or so. On a low dose so doctor said he can double the dosage and see if that helps even more.

REPLY
@fishnuts99

I have the Accu Relief brand electrical foot stimulator, have had it for several years. Feels good while using it but it has not brought any relief to the foot neuropathy at all. My neuro doctor wrote me a scrip for Duloxetine 6 weeks ago and it has reduced the pain level by 50% or so. On a low dose so doctor said he can double the dosage and see if that helps even more.

Jump to this post

will ask my doc about your new script.

REPLY
Please sign in or register to post a reply.