My neuropathy started in my feet more than 15 years ago, but was mis-diagnosed by my HMO GP for years. He thought it was either being on my feet at work, then 'all in your head', then sent me to a podiatrist who suggested orthopedic shoes and inserts.
It was dx'd in 1999 when I was hospitalized for pancreatitis.
Since then, my current PCP, & my neuro & I, have worked together to decrease progression and aleviate pain- thru meds and supplements. My EMG & NCV in July, showed little to no significant difference in tests done 4 yrs ago.
I think that supplimenting B12 has been the most effective for me.

Were you diagnosed with anything or was has it been "idiopathic" the whole time?

You're supplementing with B12... were your B12 levels low?

Thanks,

Ed

I have alcoholic neuropathy (as one of the causes)
Mine is axonal sensory polyneuropathy
(of length dependent nature)

My B12 was borderline at about 550-600 and now
it is in the 1200-1500 range. The original B12 range
was probably a cause of the alcohol.
But my Sx were prior to the heavy alcohol.
But I was a musician and was playing in bars for many years of my adult life. My doc was mis-diagnosing my Sx for at least 5 years & I was self medicating with booze, before my Sx were finally Dx'd....... when I was hospitalized for pancreatitis in 1999. A change in docs and getting a good neuro specialist in PN, as well as these boards helped me find my way to living with PN.
Acceptance then taking action, were my biggest hurdles. Once past these, I was on my way to finding the proper treatment, meds, and supplements.

went from mild nerve damage (I woke up one morning with a completley numbly hand and foot but not much attention was paid to symtoms) and being able to up walk 3 flights to my apartment to a wheeldhair in little over a year - and tests confirmed completely senosry loss... I have full body pn - presumed genetic - (no other explanation has been found and high dose ivig didnt help - had every test in the books and consistenent is the presentation of the damage - both large and small fiber loss, and severe nerve root loss) also autonomic nueropathy - leaving me unable to have any food - just a few liquid supplements (9 years now) - and heart complications that continue to worsen but are controlled for now with meds....... (all my bloodwork was fine during all of this)

We are all different - my docs at first thought no big deal - just a post viral infection.... so it sure does pay do do our own reserach!