Hi Ann @user_ch98d0b5c, I can relate to why you feel it's a wast of time and energy after being told there is no answer for my idiopathic SFPN "numbness". I avoided getting a diagnosis for more than 20 years because my PCP told me there's nothing that helps when I asked him if you determine it's caused by nerve damage, what can you do? I walked out of the appointment with the Mayo neurologist pretty discouraged after hearing there is nothing that will help, just let us know if it gets worse. When I got home I decided I have to change my mindset and look elsewhere for something that will help. My search brought me to Connect and helped me become a better advocate for my health.

While I'm not cured, like others on Connect, I found something that helps me. Not sure if you have seen the following discussion where members have shared their neuropathy story and what has helped them.
-- Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/discussion/member-neuoropathy-journey-stories-whats-yours/

I hope you don't give up and you are able to find something that gives you relief.

@user_ch98d0b5c There is always still hope! You are the expert in this situation, as you know your body more than anyone else. Talk to your doctors, spend time doing your own research and keep track of what helps/doesn't. Think of it as a mysterious tree that's standing tall in front of you. Sit by it, climb it, talk to it, even name it if possible! Spend quality time respecting and appreciating it. What others would consider a curse may actually be a gift specifically for you. I know that sounds crazy and maybe hard to fathom, but I speak for myself at least on this one. You've got the hard part out of the way in exposing it, now comes the fun part where you get to play artist and own the thing. When you discover new information, hints, tips, tricks etc then use that to encourage others who are also struggling. You are not alone, there are many of us out here to love, support and continuously uplift you. You've got this, never never give up! 🙂

I think I understand your frustration. After 5 years I’m still looking for answers. My personal view is that I don’t want to be told there’s nothing that can be done until they’ve done enough convincing diagnostics to be be pretty certain of it. I’ve learned enough so far, much from this group, about what tests are out there and similarities in my symptoms with others who are ahead of me in the journey. My number one goal is to see if I can at least help stop my deterioration and avoid institutionalization. When this unknown condition smacked me suddenly 5 yrs ago, accompanied with an infection those SC doctors say had nothing to do with it, I went from running 3 mikes every day to a wheelchair without hand use to wipe myself, and spent 7 weeks in hospital and rehab to learn life as severely handicapped. After 6 months of rehab, I’ve graduated to walker and have gained a lot of strength back, but still cannot be independent. This group, especially with great mentors like John has given me so much information and guidance to help me live with what I have now, and if it continues to be determined there’s no medical help available. I know now that I am not alone and this group surrounds me with so many people who understand us and can help cut to the chase in a lot of subjects because if research they’ve done ahead of us. I’m sorry, as I feel for myself, that there’s frustration with the lack of medical solutions for permanent solutions, snd hope we create awareness to get more help in researching and curing our neurological conditions.

I also saw a doctor at JOHNS Hopkins Hospital for evaluation for neuropathy. He had no answers for me either.I also have Erythromelagia, and there is no treatment or cure for that either. The dramatic swings in outdoor furniture or indoor temperature make my feet turn fire engines red get very hot and swollen. I’m taking Gabapentin, but if the dose is increased it causes fluid retention and my feet swell more. I also use Rhofade cream on my feet up to 4 x day. It helps a little temporarily.