Living with Neuropathy - Welcome to the group

Hi Leonard, you are so right, I think maybe extra B-12, D and C could be helpful vitamins at our age (most of us!) but food is the best source. Helen

Just curious, as I too am taking supplements, stop and restart at times. How long would you wait before deciding it works? Or doesn’t? With neuropathy coming and going in intensity and frequency it’s all a big guessing game sometimes...

Hi Leonard @jakedduck1 I agree. I have found getting nutrients through food has certainly worked out better for me. Remember some of our foods may be fortified too. I eat mainly fresh foods like veggies and fruits with the exception of dry beans and grains. I have eaten this way all my life and have never discovered any deficiencies through health complaints or blood work, not even while pregnant. I am fortunate to still be able to make my foods from scratch. I never buy any bread. I use my low carb dough recipe to make breads in different forms including pizza. I bake 2-3 times per week. I only take a few supplements and at times I take a rest from them all. I don’t take any medications so it is nice to take a break.
I believe diet is very important. I have learned through trial and error that most supplements have not made an improvement for me. What has helped me the most is a diet low in carbs and low in fat plus a regular exercise routine. I know through trial and error I have regained some feeling. To me the effort was worth not taking a “magic” pill. Nothing comes easy. I have enough health issues without needing permanent damage from the side effects of medications. There are no guarantees with medications. We make our best judgement with the given information. I have found through my experiences most physicians to be pill pushers. I support taking medications when the benefits outweigh the risks. I will learn more in a month after my routine bloodwork results. My goal is to have a better fasting blood sugar from the previous year. Thank you for your comments. I wish you all the best. Toni

Toni, can I hire you? I need someone like you to buy and prepare nutritious food for me! I try hard but can barely stand a lot of the time. Who taught you at a young age how important nutritious food is and how to prepare it? You must have had good self-esteem and had a good childhood.?? Warmest wishes, Sunnyflower

Hi Sunny, thank you for your lovely comments. Cooking and nutrition has always been an interest of mine since childhood. I even taught a few things to my mother through the years. In fact I am still educating her with diet due to her health issues. She will soon be 91 and is doing quite well. She and her mother inspired me to cook using the old methods. I have lived in the very same village. At one time there was no electricity nor hot water. Electricity came in the 1950s I must say people seemed much happier back then with less available than today. My grandmother survived the Spanish Flu and lived to tell us about her experience. I never heard about it from the media until recently.
Anyways, I believe cooking comes easier when it is a hobby rather than a chore. It is challenging. I still create new ideas with combining foods that are plant based. I remember as a teenager I made a faux tuna salad. It became a big hit with my family. Tofu was not in stores then. Because I was curious I made my own from scratch. Thank you Sunny. I am physically limited now but I find the tools I need to keep cooking. Warmest wishes to you too. Toni

Hi—new—peripheral neuropathy since 12–idiopathic—Accupincture in 14–ultima neuro 15 to present—Vanderbilt in 17–very candid(as always-wish to “get well”)—highly competitive—drank alcohol—not alcoholic but more than most—told to limit alcohol(which I had already begun to do)—neuropathy was more of “nuisance” at that time—also previous smoker for 40 years—vascular reports good—never low b’s(alcohol normal)—progressed—8/18 prp injections—COMPLETE asymptomatic for 8 months(if alcohol was “cause”-how could that happen-not denying “irritant”)—symptoms returned 4/19 without “known” cause(had hip replacement 3/19)—slowly progressed from “feet only”—up legs and into hands—conflicting reports on “gluten sensitivity”(tested for celiac-am not)—gut repair and supplement support to “fix” but without “cause” for sure—how can you stop progression “for sure”(second round of prp injections-did not work)—any thoughts? Thanks for reading & responding

Hello @crisis1152, Welcome to Connect. I also have idiopathic small fiber PN. My neurologist thought that it was probably genetic but no one in my immediate family is around for comparison. It can be frustrating but I've found it helps to keep learning as much as you can about your condition and symptoms which is a good thing about Connect. Members share their personal experiences, what's helped, what hasn't helped, etc. and we can learn from each other. There is another discussion you might find helpful by reading what other members have shared.

- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

If I read correctly you've had peripheral neuropathy since 2012. When you were diagnosed did you start any treatments for the associated pain?

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?

Hi Toni, I love your story! I can barely stand to prepare food. Somehow I'm hanging on. I've had to change my daily routine to accomplish tasks a few at a time. What is the best, lowest calorie way to prepare baby spinach to preserve the nutrients? I've been trying to incorporate leafy greens into my diet and really don't like most of them. I love romaine lettuce leaves. Thanks so much, Sunny

@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/