Living with Neuropathy - Welcome to the group

Hi Fred, I found that post from 3 days ago and realized I had read it before, it just seemed like longer ago than 3 days for some reason. So you have decided that it is helping enough to be worth installing. It is helping you to walk (which is a BIG deal) but not that much with the pain. Mixed bag, but better than not doing it. I hope after you get them installed (this month sometime?) that you have an even better result and that it helps you with your pain too. I am going to be very interested in how you do, and I hope the answer is "fantastic!". My best to you Fred, I am vicariously along with you for the ride. Anticipating all upcoming updates. Hang in there, Hank

@cathylynch, Another welcome to the pn group, Cathy. Just want to reiterate that Rachel's suggestions at @rwinney were spot on in my situation. My cardiologist referred me to a neurologist when I told him of my numbness in my feet. The neurologist performed some nerve tests, (not bad at all!) and had what seemed like qts of blood drawn at the time. vbg I was diagnosed with pn but also referred for the diabetes test which revealed I was pre-diabetic. While I am so thankful that I have a diagnosis for my pn, and the pain for me is manageable, I am even more grateful that the specialist required the diabetes test. Now diet and exercise are helping that as well. An earlier doc had told me that my numbness was due to "aging and possibly arthritis" which didn't seem the answer to me. Becoming a patient advocate for my health issues sometimes means being "diplomatically" persistent in asking for specialist referrals. Hope you'll pursue seeking a neurologist appointment and let us know how you are doing.

Until I developed plantar fasciitis from wearing inexpensive sandals while strolling my baby grandson to a neighborhood park, I'd never paid much attention to my feet. That very slow recovery was an excellent teacher for me to never again stint on buying well fitting shoes. I have no idea if that contributed to my later diagnosis of pn but once my feet hurt, it seemed that everyone I saw was limping or having trouble navigating. Maybe we become more aware when wearing similar moccasins? Best to you as you seek answers.

Thanks for welcoming me to the group. Im curious to see if any has a clue about my problem. My right foot and basically the right 3 toes and and foot base directly behind them feel like they are huge and I have a big lump of newspaper wadded up behind my toes.. When I put a shoe or sock on it gets even worse. I walk everyday but it doesnt change anything, just simply feels as if it is getting bigger.When I lay down the ache seems to move up my leg and into my hip. I wake up approximately every 15-20 minutes with severe cramp/ charlie horses all night long. The only relief is to get up and put weight on the leg. I have been to several doctors,the whole gammit at orthopedic doctors and had a nerve conduction test, steroid shots into my back and hip of which none helped at all. The doctors leave me feeling as if its all in my head. Yes I have had a back fusion surgery 3 years ago however this was happening prior to that.I dont feel as if this is just really in my head as it waked me up in the middle of the night all night long. Have others had this same issue? Have you ever found a doctor to help? If so What type doctor do you recommend. Im so sick of this and Hope you guys might can enlighten me. Thanks for any help in advance

Hello @mertgraves, Welcome to Mayo Clinic Connect. There is another discussion you might find helpful -- Severe leg cramps: https://connect.mayoclinic.org/discussion/severe-muscle-cramps/

I also found a couple of articles that may provide some help:
-- 6 causes of nocturnal foot cramps: https://www.medicalnewstoday.com/articles/foot-cramps-at-night
-- Aching Feet At Night? 5 Shocking Causes Of Your Discomfort: https://www.medicaldaily.com/5-causes-aching-feet-night-431985

You mentioned being to several doctors and not be able to get any treatment or diagnosis that helps. Have you thought about seeking help at a large teaching hospital or the Mayo Clinic? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

@mertgraves I suppose it was a neurologist who did the nerve conduction test. Did you also have a skin puncture test? I would be pressing the neurologist to consider other tests for peripheral neuropathy. The symptoms you're describing are quite similar to what I felt in the early stages of pn.

Are you feeling other unusual things, such as numbness in your hands, tingling or pins and needles. Looking online at what the signs and symptoms of PN might be helpful.

How long ago did you have the nerve conduction test? Maybe another neurologist would see things others have missed. He/she should suggest further tests.

May you find some useful answers soon.

Jim

Hi @mertgraves and welcome from me as well. I often read posts with interest but absolutely zero knowledge of reasons for a person's condition as well as no experience with same. With that said, my mother has had severe leg cramps for years which she treats by drinking quinine water before bedtime. This is a well known treatment for charlie horse I know but just thought I'd throw it out there just in case you might not have tried it. It also probably won't help your other symptoms. But I hope you are able to find help and relief from your issue in any case. Best, Hank

Hi:

Are there any success stories here? Has anyone been able to reverse their nerve damage? Has anyone found a treatment that works? I don't care what it is, if it's helped you please let me know.

Thanks,

Mat

Hi Matthew, I think the answer is not really to reversing nerve damage. I do think that I have stopped the progression in mine but then I've not had any additional tests done to see if the diagnosis has improved or if the tests show that it's not as bad now. There is another discussion we started to capture members neuropathy stories here.

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

Thanks John. I'm trying to focus exclusively on success stories or treatments that have helped people. Or perhaps info on the latest medical breakthroughs, if any. Any promising new procedures/treatments?

@mathewv, I think stem cell therapy holds promise but it's just not there yet and I have yet to hear of a successful neuropathy stem cell treatment although there have been a lot of clinics claiming it works and the FDA has warned against them.

I attached some notes I took at a Minnesota Neuropathy Association meeting August 2018 where the speaker was discussing the outlook of stem cell treatments for neuropathy. The last section of the notes has links to why it's not ready for prime time treatment yet. Also the FDA has put out several warnings on these clinics popping up all over the U.S.

FDA Warns About Stem Cell Therapies
— https://www.fda.gov/ForConsumers/ConsumerUpdates/ucm286155.htm

18Aug04-MNA-Mtg-Notes:
https://cdn.prod-carehubs.net/n1/748e8fe697af5de8/uploads/2019/01/18Aug04-MNA-Mtg-Notes.pdf