@neuroliz you are definitely not an idiot. I also have idiopathic small fiber PN. I just have numbness in my ankles and feet but have had it for 20+ years. A few years ago at a Minnesota Neuropathy Association meeting we had an 80 year old neurologist as a speaker and one of the things he told us that made me laugh was how the term idiopathic came about for a diagnosis - from the idiot that couldn't figure it out (in so many words). 🙂

I would be wary of a doctor wanting to inject stem cells in my back and ankles to get rid of neuropathy pain. I take supplements that help with my neuropathy and has helped others with pain symptoms but it's not covered by Medicare either. You can read what helps me in my story posted earlier on Connect here: https://connect.mayoclinic.org/discussion/anyone-here-dealing-with-peripheral-neuropathy/?pg=42#comment-65985

@rwinney @jimhd @artscaping and others may have some suggestions for you also.

Hello @neuroliz and welcone! I'm curious what kind of Dr you are referring to that is suggesting stem cells for neuropathy?
I have yet to find in my research (and I'm no Dr) that stem cell injections are a promising treatment however, I do understand the whole grasping at straws theory.

A bit about me...last year was my 3D year:
1. Diagnosis
2. Discovery
3. Decline

I spent the year panicking and in fear of what I was losing in my body on a daily basis. I was in denial, scraping and searching for any help or fix. This included lidocaine injections for over 5 months which were barely ever talked about in this forum. Nor were they outlined anywhere in treating my disease but, I was desperate for help and tried anyway.

My underlying cause of progressive small fiber polyneuropathy was B12 deficiency. Not to be pessimistic but, finding my cause did not get me ahead of my neuropathy. I might as well be idiopathic right along with you. This may not be true for all but, for me it is.

The lidocaine injections did nothing, bringing my b12 levels up did nothing, the nerve damage was done and it took a while for me to accept and come to terms with that. Each of us is very different and we all need to come to our own terms and that may take time to figure it all out.

I recommend a layered approach...learning as much as you possibly can, (watching @johnbishop recent you tube link on peripheral neuropathy), looking up government/fda findings, research studies by Dr. Anne Louise Oaklander, reading what others personal experiences have been, gathering tricks of the trade...then making educated decisions on what may work best for you, given your case and circumstances. Good communication with the proper Drs helps too.

Another layer is treatment approach...notable neuropathy meds, vitamins and supplements, eating a healthy nerve friendly diet, excercise/stretching that suits your abilities, mindfulness and meditation because the brain has potential to be our most powerful tool and influencer. Physical therapy, cognitive behavioral therapy, massage, acupuncture. Play around with it all to see what you may benefit from. Again, a layered approach.

It all sounds so easy to me now but, if some one told me this stuff in a nut shell last year, I would have been too overwhelmed to listen and apply exactly. It's up to each individual to navigate accordingly and like anything else in life sometimes it only works by trial and error.

I wish you clarity and easing of your pain. Hope that you will be your biggest and best advocate! We are here to help, support, encourage and comfort you. Best of luck on your journey. 🍀

Rachel

Oh and btw ...heat and ice have been my saviour most days.