I was just wondering at what point do you accept you have idiopathic neuropathy. I initially went to two neurologists - one did more blood work when I saw her. I do have stenosis and saw on one post someone was diagnosed with PN due to this... The very first 2 nerve tests I had it did not show the neuropathy even though I had symptoms....
Does it sometimes not show up even if you have symptoms until it really takes hold?

Yes, from what I have read here others have negative tests but quite severe symptoms.
You should know that even if an EMG NCS or skin biopsy show nerve damage they do not usually explain it. It is very possible to have positive test results and still be idiopathic.
Your doctors are unlikely to keep searching for a reason once the obvious ones- diabetes, alcoholic, hereditary, are eliminated. Many here have been forced to become detectives, looking for toxic exposures, drug reactions, etc.

Hey there IllPn......I'm fairly new here but I can tell u of my experience...short story:

Was already pre diabetic when I had to have chemo. The only symptoms I had prior to chemo were burning in my toes at night after I had worked all day. Never paid much attn. to it. A month after chemo ended (March of this year) I suddenly could barely walk....burning, tingling, electrical currents running from mid foot to toes on each foot. Went to my PCP and she said neuropathy...my A1C was up to 8.7 (not high for some people on this site). She did lots of blood work and I had the nerve conduction done. It was negative...I'll never forget the smug face that dr had when he told me that. My PCP put me on 100 mg 3 x a day and then the journey started through quite a few dr's (still have not found the right mix for me). I then read up on the skin punch biopsy and asked my foot dr to do it for me and he agreed. The results ? 0....I had 0 A and C fibers in my feet so the diagnosis is small fiber neuropathy.

My belief is that the chemo escalated my neuropathy. I'm titrating up from 1800 mg of gabapentin a day to 2700 mg per my neuro.

Not sure this info will help much but I wish you lots of luck in finding out how to treat it.

Debi from Georgia

Debi did the gabapentin make you sedated? My neuro wanted me to try Cymbalta I have read on this website it is expensive?? The insurance co has not approved it as yet...for some reason which I think is this. I really don't even want to try the drug as any drug that sedates I just can't take....

idiopathic

1. relating to or denoting any disease or condition that arises spontaneously or for which the cause is unknown.

That may depend in what sense one means "idiopathic"; that the cause is truly known, or that it just has not been found (for a variety of possible reasons). Some people (here and elsewhere) have found either a cause or clues because they have been proactive in doing so rather than leave it solely in the hands of doctors.

Acceptance may come as one of the Kübler-Ross stages of grief, as it sometimes does with other chronic illnesses and life-changing events.

Doc

Hey there....all insurances are different...My husbands has 2 prices on drugs.....generic for $10 and brands for $50 so of course we try to stay away from anything that doesn't have a generic but that is not always available. Gabapentin is the generic for Neurotin. I started at 100 mg 3 times a day back in May and I never really knew I was taking it. Then up to 300 mg a day 3 times a day and I didn't have any issues then either. But.....titrating up to the 1800 mg 3 times a day took some getting use to. He gave me 3 weeks to get up to the 1800 and that got me for the first 4 or 5 days. Dizzy, drunk feeling every time I titrated up. I had an appoint with the neuro last Tues. Since I'm still hurting and not able to walk or stand for any length of time or distance he's titrating me up from 1800 to 2700 mg a day. I asked him to let me increase every 2 weeks instead of 1 and he agreed. I still get the same feelings but at least I have a week and a half before I have to go up again. And once I reach 2700 mg a day the symptoms will fade away after a week.

Some people are unable to take gabapentin at all....the same for the other drugs....u have to try them to determine which one u can take or if they work for u.

Just keep reading as much as you can on your condition. The info within this site is priceless.

Take care of yourself

Debi from Georgia

Thanks the problem is I am so drug sensitive think I am too nerve sensitive too or would not be in all this pain... it is depressing enough to be dealing with pain but then not be able to function.. dealing with pain by my face out of my own stupidity now which makes it harder to take as I knew better than have someone touch my neck again...

I would try some ice pack treatments on the neck.

I use a gel pack made by 3M (you put it in the freezer to recharge it), on many of my pains, that seem related to my back or neck.

If your neck issues are inflammatory or related the Herpes Zoster virus activating, the ice will quench it.

Use a cloth between the ice pack and your skin always. And no more than 20 minutes at a time. You can do this twice a day, and it may help.

Heat used in a prolonged fashion will activate pain further. No more than 10 minutes for any heat treatments if you do decide to use them.

I do not let anyone around my feet at all. If I rub them it starts the nerves up and I'm looking for a pain pill.

So I figured that I better not take a chance on them touching me anywhere. But that's just me.

Debi from Georgia