I don’t know how I would have gotten as far as I have without this group. I am so glad I discovered it - on my own of course, as no doctor in my history ever steered me toward any forum or research (for the record, I’ve never been to Mayo, but hope and assume they inform their patients about it)
Last month I mentioned to my new Neurologist how I get most of my “living with neuropathy” suggestions for maintaining mobility & increasing strength, as well as coping & adaptation ideas, from this Mayo Connect group. She quickly responded with a negative opinion of such groups. It just increased my concern about this doctor as I was already in shock because she had just told me that heat & cold intolerance in my extremities was not a symptom of Neuropathy! (That’s why I had told her about this group of people who many listed as a common complaint, as well as Google) I was just stunned that this symptom of mine that has been with me since the onset of PN and acknowledged by my previous Neurologists was being dismissed by her; and then she dismissed the forum! Perhaps she feels like these groups are a challenge to her authority and expertise, as I felt she was a bit arrogant. Let me add though - in her doctors visit notes on my portal, when she listed my symptom history, she did include the heat/cold intolerance in hands & feet.
Your last comment is so true about everyone of us being different and responding differently. It would be ideal if one size fit all, but I’m glad we can all throw out what’s worked (or didn’t work) so at least we have things to try, or jump ahead in the learning curve because of research and knowledge already accumulated by others.