Living with Neuropathy - Welcome to the group

Hi Steve @steveinmontana, I did give up all alcohol after being diagnosed with idiopathic small fiber peripheral neuropathy but I don't think it had anything to do with causing my neuropathy. I think you have to be in the alcoholic category for nerve damage to happen from drinking but then I'm not a doctor so it's just my own opinion. I do think occasional drinks are OK but I just decided I didn't need one more thing to worry about. I tried a TENS unit for about 4 months or so but it really didn't help with my numbness and I don't have the pain that some folks do. I did get a good laugh when my wife decided she wanted to try it to see how it felt so I hooked it up and she stepped on the foot pads if only for a few seconds. After a YIKES! She got her feet off pretty quick. It wasn't the highest setting but it was near the top and it only felt like a little tingling to me.

If you haven't already seen it, the Foundation for Peripheral Neuropathy has a good list of available treatments that might be helpful - https://www.foundationforpn.org/treatments/.

I have read and posted on this site before but recently I have noticed that my peripheral neuropathy of feet and ankles is getting worse. At one point, someone posted a link that listed doctors by area that specialized in this disease. I saw doctors in my area that I feel I now need to see. However, I don't have that link anymore. Does anyone have it? Do you know which link that I am talking about. I am very worried as my balance and just walking is getting worse. I feel that at this point I need to see a neurologist who specializes in my problem so that I at least know I am at the right place!!! Any help with finding this link again is welcomed. Thank you. Susan

Thank you. I was able to find that list. My next question is does anyone in this chat group feel that we as patients are suppose to act as our doctors? As mentioned, I have been reading and posting here for over 1 year and I feel no more enlightened than when I began. I find all of the information very, very confusing ie. what vitamins to take, diet, etc., etc. I am no rocket scientist admittedly but their must be a better way of sifting through all of this information to actually understand what am I suppose to do to at least slow down this progression of PN. I am scared. I do not want to wind up in a wheelchair or have to have an amputation. Honestly, it is very frightening to me and I thought that if I at least found a doctor who specialized in PN, I could pare down the info and try to follow his/her advice. I cannot understand what to do, what to take, etc., etc. I do understand that PN is complicated but surely a neurologist who specializes in this disease can help me wade through all of this info and start doing what is best for me. I am willing to try different solutions but I cannot be expected to understand what to do!!!! Very, very worried in Massachusetts!!!!

Unfortunetly, it is progressive and there is no cure, only some relief available. I find warm water soaks with Epsom salts and apple cider vinegar temporarily helpful. I also have found some temporary relief with Lune cream. I am sure others have suggesstions for temporary relief. Good luck . Most Drs merely prescribed various medications

If it’s any consolation I was terrified when I developed neuropathy 6 years ago and thought I’d be using a walker by now. But despite my increasing parathesia, I’m not completely numb and can still walk comfortably as long as I’m not barefoot. I developed neuropathy after knee surgery, but my recent EMG shows my S1 L5 discs are causing it and it’s actually Radiculopathy. In any case, I think many people are just living actively with neuropathy even after years and it’s only in extreme cases you would need a wheelchair.

After listening to so many of you suffering from(as I am) PN, it seems that we have several things in common:
1. difficulty in achieving an accurate diagnosis
2. finding a doctor who is knowledgeable, competent and empathetic
3. finding some kind of treatment that will help alleviate the symptoms of this accursed disease
Personally, I have been to more doctors and chiropractors than I can even remember or add up(20?). I think my own PN started with an injury(a bad fall on lower back). The great thing about Mayo Connect is that we can talk with others in the same boat, share experiences, and compare treatment effectiveness. I'm sure we all share one common wish/desire: the day when PN can be cured!
May you all have a blessed day.

Thank you for your comments and talking me down off the ledge as they say!!!! Yes, to all of it.
No great treatment or cure....we are survivors and will try to get help but in the end, will find ways to manage our pain and balance issues. For me, my shower chair is a godsend! I only wish that more people with balance issues would get one. Yes, I had to put my vanity aside but after than, got on Amazon and had a $30.00 sturdy, water resistant chair that fits in my shower stall and gives me the confidence to shower leisurely without worrying about falling. Falling it seems is a game changer for most and having witnessed first hand the complications etc. of several falls, I never and I will repeat never want that to happen to me (or anyone else reading this post. Use your cane, walker etc. what gives you good purchase on your feet and keep out of the hospitals and rehab centers.

I have m s scs implant for m s hug and foot neuropathy relief

Will an scs implant give relief for m s hug and foot neuropathy relief?thank u

Thanks for your post. You are so right when you say that we have to put your vanity aside at some point.
I was a skier, biker, hiker, etc. Now it is hard to walk a quarter of a mile. I guess that is better than many. We have to keep keeping on.