Looking to connect with people who have non-diabetic neuropathy

@davidmoll
My 40 year battle with neuropathy most likely was caused by years of toxic effects of seizure medications. But as @njed once wisely pointed out I will never know for sure. It just seems the most likely cause. My neuropathy did progress and is considered permanent now at
stage 4. Neuropathy may stabilize or even improve.
Although my neuropathy was stable for probably 30 years it did progress to stage 4. Thats when my pain disappeared, replaced by numbness. So as far as I'm concerned, even though the progression brought on ED, bowel and bladder complications at least the horrendous pain is gone. For me, the issues from progression are easier to deal with than the pain was. I try and look at any potential progression in a positive way. Maybe it will improve more even though the doctors say otherwise. Doctors arent clairvoyant but I've had some who thought they were.
Take care,
Jake

@arcuri24 I think the non-diabetic group of us with PN is substantial. In 2019, I was so convinced that my PN was related to lower back issues, I was able to schedule an appointment with Mayo in MN. After spending several days of thorough testing, the cause of my PN is unknown. Yet, all my symptoms point towards having diabetes that every doctor I've been to all ask me several times if I'm a diabetic. My blood work is normal. Mayo could not give me any definitive cause. I know what I have but not the why. After chasing the why down the rabbit hole for years, I finally decided to concentrate on how to live with PN. You are right, PN is a life changing experience and for me, acceptance and learning to live with it, making necessary adjustments along the way is important. Be safe and best to you going forward. Ed

What seizure medication did you use that caused the neuropathy

I agree. And, I did get treated with antibiotics for my sinus infection, so perhaps, that, and not the medrol caused me to get PN. My cousin has some numbness in her feet--she is now using a cane because her legs feel wobbly. She never went to the doctor or took any medication. If you say there is between 20 and 30 million folk with this, then where is the lobby to make something happen--like a cure--or at least better treatments. I am now gun-shy with medicines--the side effects seem to be enormous. For me, physical therapy is the way to go. I am supported there--unlike at the doctors who seem to have the agenda to medicate and medicate again. I may try reflexology and acupuncture. Plus, my podiatrist is researching a new cream based on capsaicin which purports to ease pain in feet for three months. Lets hope summer is kind to us PN sufferers!

Like you my blood work was normal and I, too, once thought that I was diabetic. Since my brother was diagnosed with RA, I thought perhaps, my PN was due to an RA marker. I think you made the right decision in stating that you will try to live with PN. I must do the same as the doctors seem to only want to give me drugs like zoloft or gabapentin and their lack of a bedside manner only causes stress. Far from giving up, I, too, will in your words, make "necessary adjustment"--and some will be for better living--so I thank you for your kind, sympathetic words. Let us keep hope alive for an eventual cure!!

I was diagnosed with length dependent sensiromotor neuropathy a few months ago. I was diagnosed with a compressed nerve which is chronic. I was surprised to hear about the neuropathy. My understanding is that it is progressive. I became quite depressed but now I am feeling pretty good with acceptance. I walk with foot discomfort. It is difficult to do much else. I am on Gabapentin which niw seems ti be helping. Physical therapy seems to be helping the compressed nerve issue but not the neuropathy.

I wonder what other people's experience is with this?

I too have PN probably from radiation I had back in 2004 and 2010 due to me tactic thyroid cancer ,(which I still have.) I'm treated at Sloan Kettering which does not care about my PN of course.
Anyway, my PN started in 2010 and has gotten progressively worse. I also had 2 back surgeries in 2009 _ and 2011 and see a pain mgmt doctor. He gives me oxcodone and Gabapentin which help .my back pain but only help the PN for 2-3 hours 4x a day. It is crazy to me (I'm 78) that there is no help for people with this condition. No $$$ in it, I guess.
Thanks for these boards which I just found. At least you ate people with compassion and possible ideas. Good luck to us all.