Looking to connect with people who have non-diabetic neuropathy

Hi, I just joined Connect and am so sorry to hear about all you each are going through. I do agree with John. I also joined the Foundation of Peripheral Neuropathy when I discovered them online a few years ago. I have Neuropathy I developed on dialysis, however, I was severely abused on dialysis and they caused a fall out of my bed that injured my spine. I had severe Sciatica and a few months later as things progressed I saw my Physiologist and his partner did an ENG. It revealed I developed nerve damage down both my legs, I have annular tears and crushed disks , and Sacroilliac Joint Arthritis later developed from that fall. I transferred centers and a year later their wonderful Dialysis RN I knew for 10 yrs, told me she thought I had Neuropathy from Dialysis. It was then I began Gabapentin at 100 mg. A month after that I received my kidney transplant and I have been taking 900mg daily since. Its a miracle drug. Since then, which was back in 2014, I have been prescribed Tramadol which I try only to take it when its absolutely unbearable. I had been prescribed Tramadol by my Primary Care Doctors but they retired. Well, suddenly this year the Transplant Center Pharmacy said the Gabapentin was no longer being filled by the Transplant Center. Before the operation, things got confused as I had transferred the med down here to a local pharmacy. So all that time my local Nephrologist prescribed it when I thought it was the Transplant Center. Ha Ha. I take so many pills I just include it in my pill box. Well this was a happy accident as I learned from this when both Doctors refused to continue prescribing Gabapentin they said I needed to see a Neurologist for it! That was a complete surprise to me. Yet, it was also another happy accident as this is the exact Specialist needed for prescribing Tramadol and just in time to refill my prescription as I no longer had a doctor since my PCP retired. That's important because Tramadol is a Neuropathic Drug and is the only medication that works for my pain. Knowing its the brain that is in control of my Neuropathy any futher developments I now have the right Specialist to guide me through it. When I read about your horrible reaction to your medication, it reminded me of when I was given a Lipitor a few months after my fall out of bed and oh I had such a bad reaction I had Restless Leg Syndrome and a fever for 2 weeks. I was very lucky that stopped. However, I was misdiagnosed when I was 22 and that med given to me at the time blew out both my kidneys instantly only I did not know until I was 38. Its a matter of finding the right Specialist first to define the actual cause and that unforunately takes time. Once you fine the correct Specialist they can accurately diagnosis and provide the right medication for it. It took me 38 specialists in 8 months, 20 yrs ago, to find out I had kidney failure in both kidneys. My Rheumatologist did a blood test and he sent me immediately to a Nephrologist of which I had never heard of. I had never been sick a day in my life. Recently I found out my Mother has Neuropathy too but she is 88 and doesn't know how she got it. So that leads me to think that if not a coincidence, my Neuorpathy may also be hereditary. I would suggest since the ENT you just had done, the electrical test where they put the needles on you, that perhaps a Neurologist would be the one to pursue, since it was just confirmed you have severe Neuopathy. Starting from the top down, the Brain down the Spine, may be of help to you. Perhaps it will save you a lot of time hunting doctors and causes as well. He may be able to help you most. Tramadol also is an SSRI which coincidentally also helps anxiety so that may help kill 2 birds with one stone. It will get you off those other types of anxiety meds that cause severe side effects. Gabapentin is an Anticonvulsant and Tramadol is an SSRI but both are Neuropathic drugs. In my own experience, they work wonders for me. I recommend seeing a Neurologist. I hope this helps. I so hope time goes by as fast as it can to get your pain under control. I am so sorry you have to endure this. Wish you well!.

It must've very depressing and annoying that no cure is in sight....

The nest thing I do is move. And move some more with strengthening exercises. Keep that blood flowing!

Wow! Thank you so much for your post! I just this moment joined Mayo Connect and yours was the first post I noticed out of all. This is the first time since 2013 I have heard someone not only ask this question, but someone who described this very type I have, which is non-diabetic. I developed Neuropathy on dialysis but I was injured on dialysis which I believe is the original cause as I got nerve damage down both legs from it. Everything I look up on line only described Diabetic Neuropathy. I felt like I didn't exist in their descriptions, although I was able to use the info for myself. So I really appreciate you reaching out. You are the first I get to identify with! I hope you have a painfree feeling night!

I've been taking ALA for about 5 years. This was a suggestion by several neuro docs. About 6 days ago, I switched over to the R-ALA. I have no pain, only numbness and poor balance. I am taking 1200 mg. daily. I understand it can take about 3 weeks for any possible improvement. Fingers crossed. Ed

I also have non diabetic small sensory neuropathy and autonomic neuropathy. I also use marijuana but I prefer the THC gummy’s cause I don’t like to smoke it. I will smoke on occasions when the pain is off the charts. I also take gabapentin but I take it 3 times a day. I also am on Kratom for pain and this works better then opiates without any side affects, addiction and you do not feel anything as far as being buzzed. It also gives me a huge boost of energy. The ones I use at nights help me sleep and help with the night pain. I order my Kratom from a company online called MitraGaia. They have inexpensive ounces for $5.00 for you to try different ones. I take clonazepam which helps with the twitching and involuntary spasms. I have Requip when I get bolts of electricity running up my legs and then my legs go into a bizarre spasm, then it starts all over with the electricity going up my legs from my feet and then the bizarre spasm again. This is worse then pain or torture. It feels like my feet are being hit by a cattle prod. But the Requip helps with that.
This SFSN is a terrible disease to have. You will always have it and the pain and everything just gets worse and worse.
There is a lot of garbage information out there on Kratom. Most of it is produced by the Pharmaceutical companies because they would rather you use their drugs. The National Kratom Association will answer concerns and there is a documentary about Kratom on YouTube.
I’m so sorry you have this and I hope you can get relief from your pain.

I have neuropathy bad. Tried Gabapentin, Cymbalta and Lyrica now my seizure medicines are effecting it. What is ALA?