Neurology at Washington University, St. Louis

Good morning @giulia76, Unfortunately you are not alone with your struggle to find answers. I also have idiopathic small fiber peripheral neuropathy diagnosed at Mayo Clinic Rochester after 20+ years of ignoring my symptoms of numbness starting in the toes and then on to the feet and legs years later. I shared my story in another discussion here - Member Neuropathy Journey Stories: What's Yours?: https://connect.mayoclinic.org/comment/310341/.

I myself have mixed feelings about trying to find out if there is a specific cause when the end result is still that there is no cure for neuropathy, only treatments. I started on my neuropathy "learning" journey in 2016 when I found Mayo Clinic Connect while looking for something that might help with my neuropathy. I have no medical background or training but I personally think we have to be our own advocate and learn as much as we can about our condition and the different treatments that are available.

If you have doubts about your diagnosis, then a second opinion is certainly in order and I would go for it if it were me. @darlia and @dont may have some experience to share on Washington State University in St. Louis.

Thank you for sharing your experience. Since I wrote this message, I received a call from WashU and I am scheduled to see one of their specialists in October. It is a wait but I am willing to try almost anything. And I am learning to speak up, ask questions, and be, as you say, my own advocate because no one else will do the work for you. I will go and read your experience in the thread you provided and I might share mine although I am always hesitant because I feel no one really cares.
Thank you again for your reply.

You might want to make a list of questions for your appointment and take them with you. Here's some suggestions I think might be really helpful.

-- Patient Revolution - Tools for the visit: https://patientrevolution.org/visit-tools

Thank you!