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Living with Neuropathy - Welcome to the group

Neuropathy | Last Active: 1 day ago | Replies (6021)

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@crisis1152

Quick story—after 26 years of gout-doctor at Vanderbilt got me on allipurinol 300 to stop and never had another attack(highly competitive golfer and retail store owner-drank considerable alcohol-not alcoholic-never low b’s)—within months slight distracting electrical “zaps” were occasional—Vanderbilt doctor said eliminate the “ethanol”😁-reduced—by 14 was more—neurologist(local) said—mild axons neuropathy-Accupincture fall 14 thru spring of 15–fall of 15 purchased “ultima neuro” and divided basin and used(actually still using)—spring of 17 was little “more” than “nuisance”—went to Vanderbilt(to head of department now)—after answering all their questions and doing all the test—he told me to limit alcohol to 1 beer a day(was not drinking that much then)—summer of 18 started program of light boots-continued advanced neuro applications and prp injections—symptoms went COMPLETELY away—assumed that was over—April 19(28 days after hip replacement-which May or may not have anything to do with this) symptoms slightly returned(without any alcohol inducement)—went thru 2 “detox” programs for different things(heavy metals,Lyme,etc)—12/19 had prp injections again—NOTHING this time—1/20 had extensive urine analysis that lead to extensive stool analysis—that showed h pylori and overgrowth in intestine—extensive program to correct and eating change—lost from 214-175–slowly weaned from gluten—conflicting analysis on “gluten sensitivity”(not celiac-tested for that)(by the way—NEVER had “gut” symptoms anytime)—trued “hyperbaric oxygen treatments(thinking maybe gut problems had messed up absorption of nutrients and correcting that then oxygen would “redrive” nutrients “deep” into tissues for “nerve revival”—didn’t effect symptoms—read book “Reversing Neuropathy” by Brian Prax—started seeing a “mentor” of his—Brain Map showed brain had over active and under active parts(learned about gut/brain relationship—how “gut” can “mess” brain up)—started eating better—using PEMF machines on head and legs—rebuilder-Hakomed-back stretcher(degenerative things going on in back and neck)—light therapy—-also went to Cleveland Clinic I’d 9/20 for testing(after being denied by Mayo-which I still do not understand)—doctor there suggested “cymbalta”(which I refuse to date to take as it and other drugs just “slow” brain function)—I want to return to “normal”—saw Neuropathy Secret Summitt lead by “podiatrist” in Utah(20 years peripheral neuropathy specialist)—these 20 people “knew more” about neuropathy and testing and supplements than “anyone” I had “ever heard”(by a lot)—started working with him—am trying “desperately” to find “absolute” cause—am not blind or stupid—if previous alcohol was cause—how did prp injections completely eliminate for 8 months? Alcohol was infuriate or contributor I’m sure but why the “major” progression after it was eliminated? Started MLS laxer treatments that I pray will work yesterday—going back to Cleveland Clinic for “skin biopsy”-QSART test and sudamotor exam 3/8—Calmare treatments in future if this doesn’t work—LOTS of prayer—believe it or not—this is short version😁—your thoughts?

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Replies to "Quick story—after 26 years of gout-doctor at Vanderbilt got me on allipurinol 300 to stop and..."

@crisis1152 - Reminds me of an old Johnny Cash song "I've Been Everywhere Man" - Except it would be I've tried everything man.😊 I haven't tried that many but have tried the tens and looked into a few of the other popular cure your neuropathy advertising. Fortunately I only have numbness with my neuropathy - my story and some of our other members experiences are in the previous discussion I shared in my first post above - https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

Couple of sites you might find helpful:
- Beware Expensive Treatments of Peripheral Neuropathy: https://www.foundationforpn.org/2016/04/11/5179/
- Living Well with PN: https://www.foundationforpn.org/living-well/
- Neuropathy Commons: https://neuropathycommons.org/

You mentioned you a looking at the Calmare Scrambler Therapy in the future. There is a discussion you might want to read through here:
- Calmare (scrambler) Therapy anyone?: https://connect.mayoclinic.org/discussion/calmare-scrambler-therapy-anyone/