Looking to connect with people who have non-diabetic neuropathy

Hi, I have non-diabetic neuropathy. I guess it came on me slowly as I didn't recognize the symptoms. Mentioned it to my doctors about some of these strange symptoms but they didn't say anything to me about it or care. Some of the symptoms were: water drips on my legs, but no rain inside my house or not carrying anything with water, that was quite a few years
back. Then later symptoms were felt like I had pins in my slippers, used to take them
off and check if there were something poking my feet etc., couldn't figure it out, was always strange, that went on for years. Also, now that I think about it, thought I had athlete's foot,
but I didn't, I used to buy Athlete's foot cream but not having the issue! Also, always having really hot hot feet, but NOT having burning feet like I do now. Now I have the severe burning,
stabbing at times, pins & needles. Once in awhile I get a numb feeling, sometimes it feels like
there it like a sock or something on a few toes or something on them or a piece of cloth, weird.
It's all so strange, it's hell at times, I'm gonna be 73 the end of this month, have had a lot for the
past 52 years. When I was 21 I was in a traumatic t-bone car accident while grocery shopping for my mom as a passenger. The car I was in was a Toyota Corolla and a big Ford LTD hit us on the passenger side flipped us over and smashed us into a corner house. The fire dept. came and cut me out with the jaws of life as I was trapped in the car between the car & house. So I wound up with a fractured pelvis & sacroiliac, knees cut to the bone by the glove box, and internal injuries. No MRI's etc. back in 1971 as they didn't exist then , Current Medical Center Report: Spinal Stenosis, Spondylolisthesis at L4-L5 level, Cervical spinal stenosis, Cervical disc disease, Disorder of sacrum, Weakness of both hips, Sacroiliitis (CMS/HCC), Sprain of sacroiliac region,
2017 LS spine x-raySevere degenerative disease at L4-5 with disc space narrowing and
very early degenerative anterolisthesis. The L4-5 anterolisthesis corrects with extension, indicating instability. Minor degenerative narrowing of disc spaces above the L4-5 level, Mild to moderate degenerative central spinal stenosis at L2-3., 2 knee replacements. I'm sure all of this had contributed to my neuropathy. I have been tested for diabetes and I don't have it. I don't drink as my ex was an alcoholic and I detest alcohol, so that rules that out. I know for sure it was the accident that contributed to this problem. I just get frustrated that we all have to dig/look up info on our own instead of the doctors helping us more. Having to be our own "Advocate" for everything. Grrrrrr. I also have some other problems, (sorry to vent here). I have
pain on my right leg where I was hit, I have to sleep with an ice pack under my right thigh. I have to see a doctor for this problem, don't know what the issue is called. Have been checking online. It burns & hurts night & day. I also have venous insufficiency from the car accident, it has caused so many problems for me, throughout my whole body, I have arthritis everywhere, I hurt everywhere. I'm trying to recover from 2 major surgeries I just had in Jan & Feb, both on my left side, so I'm sorry if I'm complaining too much, please forgive me, still in bed a lot. That is all. Take care everyone. Much love, Nancy

Hi Nancy @papercutter, Welcome to Connect. Venting helps, especially considering all that you have been through. You are right about being your own advocate. It took me awhile to learn that lesson. I'm sorry to hear about your neuropathy pain along with your other conditions along with going through recovery from 2 major surgeries...yikes!

If you are looking for reliable neuropathy treatment information, you might find the following sites helpful:
-- Foundation for Peripheral Neuropathy: https://www.foundationforpn.org/
-- Neuropathy Commons: https://neuropathycommons.org/neuropathy/neuropathy-overview.

Have your doctors provided any suggestions or treatments for your neuropathy symptoms?

I was always told that MAYO Was the Best...............................This may be true in Rochester only cuz everyplace in northern Wisconsin is like a bandaid station, urgent care is worthless, i folded my knee up with a "Bucket Handle Tear" in my meniscus, I REPEAT FOLDED IT UP SIDEWAYS! they told me" Your knee is messed up, see your primary, gave me crutches and sent me on my way. WTF ???????????

Oh Michael, I'm so sorry you're going thru torture, my heart goes out to you. It's so, so unfair
that we as human are left to to feel this pain. I feel that their is less empathy for human than
there is for other species of the other animals in the world. Why are we left to suffer, it's
inhuman, how can mankind justify that????? Where is the reasoning behind that??? There is
none !!!! I sometimes feel they give prisoners better treatment than they do some people
who are in pain ! When I was in my car accident at 21 my doctor wasn't even giving me the right amount of morphine. I was in a room with 3 other women and I was getting morphine shots even 4 hours and it was wearing off in about 1 1/4 hours. This was the night of the accident. So after it would wear off I was left screaming and crying in pain & agony, it was disturbing the other ladies in the room, this went on for a full week. He had no mercy at all!!!! He was mad at me because my mother called him up (she knew he from before when my brother broke his leg years earlier). I had ruined his ski trip to Tahoe, Ca he had planned (and he bawled me out that he had to cancel/delay his trip, poor baby, Dr Marvin G) Grrrrrrrrrrr. He could have easily callled another doctor, did he need the money that badly??????? greedy bastard. What about the hypocratic (sp) oath "Do no harm" well he certainly did harm to me, by not giving me enough Morphine when I was in constant pain!!!! Sorry losing my spelling skills, used to be so good at that, ugh. That was not all he did to me, could tell more. if you ever want to hear....
Sorry, I know we're supposed to forgive and forget, but I also came from a dysfunctional family that was abusive, so my whole life has been hell. So hard to forgive and forget. But I did promise myself 1 thing as a child that "1 would never ever hurt someone on purpose, because I knew
what it was like"!!!!!!!!!!!!!!!!!!!!!!!

And that was my solemn promise to myself, and I'm done for now. Take care again, I'm sorry you're in pain, just like me. Wish I could take your pain away. Do you watch movies or Netflix
much or have a pet?

What’s the name of the neuropathy?

Yes I would, my name is Finny4606

My neuropathy has never been given a name. I was hit by a car 1999 and my entire body was damaged.
I lost my spleen, had my head split open, both legs broken, was in hospital 3 weeks and took one year
to get back to living kinda normal. I am 88 now and have had many physical problems. I now have severe dizziness and pass out easy.
I wish the doctors could tell me what is wrong. I pray for you all.
Doublehugs to all. Anne

Would like to hear more about the SCS helps; but, it doesn't continue to help????? Since I am scheduled to have one, I would like to know what you experienced

Good evening @roslyn2314, Greetings......I just read your posts. Let me see if I understand what you are asking. You want to know about diagnostic tests for SFN because you are faced with a long wait for clinicians in Australia.

How was your SFN diagnosis made? Did you have the skin biopsy which is usually done around your ankles? That is the only definitive test I know of for SFN. Were you told the probable cause of your condition? For example, mine is the result of a long series of accidents and surgeries that created a traumatic form of neuropathy.

You also ask about a cure. Unfortunately, there is no cure for neuropathy of any kind at this time. The key is to find a way to ramp up the replacement of the nerves which no longer serve you. At this point, the process takes way too long even though our bodies work hard at it. So we are left with a strong need for something that will mask the pain caused by the lack of sufficient nerves.

I am fortunate to have found the support of medical cannabis. It doesn't wipe out the pain and insufficient functioning of muscles. It just keeps it under control so that we can continue to live and enjoy a reasonably stable existence

Can you purchase medical cannabis in your area?

May you be free of suffering and the causes of suffering.
Chris