I am courious as to what type of nueropathy you all have. Mine is due to a Vitamine B6 deficiency.

Welcome to the forum Julie. It's good you found us, lots of good info here.

I am not positive about the why's of my neuropathy. I suspect it is a B 12 deficiency caused by my celiac disease not being diagnosed for so many years. My neurologist seems to be doubting my neuropathy, he feels it is a cervical problem instead. I have an MRI and an EMG tomorrow. I honestly think he just doesn't like the fact that my family doctor diagnosed my neuropathy. Sorry, I am very sick of doctors, especially the ones who look at you as work and not a person with feelings.

Hi julie
Mine is caused through undiagnosed diabetes so they call it peripheral neuropathy.

connected to poor thyroid functioning. Started in my early 30's then.

idiopathic small fiber primarily sensory neuropathy but there could be a contribution form prediabetes. I just saw my neuro yesterday and his diagnosis hasn't changed - I'm fortunate in that I have mild motor nerve involvement but I do have very painful sensory symptoms.
Welcome to the forum - you've come to the right place for information and for support.
Alkymst

Hi Julie,
Mine is due to Sjogren's Syndrome which is an autoimmune disease. Diagnosed in my late 50's.

Billye

Mine right now is pn but also another probably undiagnosed issue though I have had every test in the book and still not sure. I suffered from severe anorexia for 12 years so may have been related to that as well.

My PN is "Small Fiber Painful Sensory Peripheral Neuropathy with constant moderate to severe pain, etiology unknown (idiopathic)". I was diagnosed over 20 years ago and despite the gazillion tests that have been done thru the years - a cause could never be found...including diabetes or pre-diabetes! I know there is a train of thought that feels all idiopathic PN must surely be caused by diabetes or at least be pre-diabetic. Well, I'm 75 years old and I'm tested yearly for diabetes and it still remains negative.
Now I no longer care what the cause is and my doc and I concentrate on pain management and we have succeeded in achieving very good results with the Fentanyl Transdermal System (the generic Duragesic Patch). I'm using one 100 strength patch and one 25 strength patch and changing them every 48 hours and my untreated 7 to 9+ pain is at the 2 to 4 level which I hardly notice anymore.
I remain hopeful that in my lifetime a cure will be found. General research continues but I think our best hope lies in stem cell research. Maybe someday enough of the "powers that be" will be afflicted with some of these dastardly conditions so that a change in attitude might be forthcoming....but....don't hold your breath.

I have severe axonal sensory motor pn with demyelination in my feet and lower legs and moderate in my hands. No cause found on tests, ideopathic, however i know it is from toxins.

HeyJoe, what kind of toxins do you think? We lived on a military base for 16 years and I can't help but wonder the same thing for myself.