Unfortunately, neuropathy without an obvious cause can be a long and frustrating road if you are looking for answers. My advice would be:

Have the emg/ncs repeated at a large teaching hospital with a neurodiagnostic dept. Having inconclusive results should get you a referral there as far as your insurance goes. Try to have all 4 limbs tested. Download the spreadsheets from www.lizajane.org. Get copies of all scans, reports, labs & organize in a binder. Take this with you if you can get a consult with a neuro at a teaching hospital. There are quite a few metabolic/autoimmune factors that can cause nerve damage.

Pay attention especially to B12 level and vitamin D. MrsD has stickies about these and tons of great information about supplements. Also do a search for mthfr mutation, a genetic mutation some of us have that affects the methylation pathways of B12 and folate.

Diet--cutting down on sugar and other simple carbs. You could try an elimination diet like the Whole 30 to see if it makes a difference in your symptoms.

Hope this helps!

glentajj - ok thank you. Out of curiousity what if my symptoms (sensitivity to clothing) is only on my right side ever and usually the trunk/side area? Does that indicate anything and is it possible to have neuropathy in a specific place or side of the body?

jenng - Thank you for your response. It is a little frustrating to be going through this while in college. Do you think there is a reason to get a repeat NCS/EMG if I no longer have large fiber symtpoms? I originally got these tests because I was tripping A LOT and my reflexes were reduced. I haven't had these problems since (another mystery). I will look into the mutation and the diet although I think I eat fairly healthy.

My doc got back to me kind of saying maybe we just need to sit and talk considering it has been a long time since we last had an appt. So maybe I will see what he says here I am just afraid he will tell me he doesnt know again and I just don't find that to be an acceptable answer anymore. I think the most confusing part of my symptoms is they don't seem to be ascending and some appear on both sides while others are unilateral. Thoughts on this? Also the running water sensation only comes on in heat could this also indicate anything?

I have also had unilateral (left-sided) dominant symptoms, only within the last few years have things shown up on the right. Not nearly as pronounced.

The emg/ncs is really a subjective test. I've had many, and not one of them is alike. I mention a teaching hospital because they do them often, and on a population with more varied disease processes. If you had an abnormal one, then a normal one, I might want to see what a 3rd one says. Long fiber damage usually doesn't disappear.

Talking with your neuro is a good idea. Show him the lizajane spreadsheets & see what he thinks.

jenng - my doc originally thought I had a reaction to a virus or something of maybe a form of Guillane-Barre because my reflexes returned upon the second visit and wast tripping as much either. The first round were not significantly abnormal but I will dig up the results when I get the chance for further input.