I think we may be in the same boat. I am also a type 1 diabetic with neuropathy in feet and legs. I get burning, heaviness every night. I feel like I have pins and needles constantly. I get shots of pain from my toes and feet that shoot up to my knees. I've tried everything, and I am looking for some relief. My problem is my last neurologist gave me a low dose of vicodin but only 15 a month. Vicodin barely dulls the pain, and then he suddenly stopped prescribing them to me. I am only 23, and it turns out my area is a "pill popping" area and everyone is afraid to prescribe pain killers. I went to the hospital last year and they gave me percosets that also helped. I am wondering if you know how I can approach my doctor to ask about painkillers. I am going to see a new neurologist tomorrow, and I am hoping he helps. I hope you find relief!

--and also what I read in the new members forum, it sounds as if first, you have to get some very strict glycemic control--without that, diabetic neuropathy just tends to get worse, as the nerves get shocked by rapidly fluctuating blood glucose levels--and, you may need a much more comprehensive work-up at a specialty center (asuming your insurance would allow it) that deals with this all the time.

Too many "regular" neurologists just know something about Type II diabetes and the standard symptomatic treatments for that (and not all of them are well-versed even in that area); you're different, in that your situation involves autoimmunity, by definition (Type I), and there are particular issues that need to be addressed. Part of your neuropathy may involve mechanisms beyond those of most Type II diabetic neuropathy sufferers.

Would it be feasible to come to NYC, to the Cornell Weill Center for Peripheral Neuropathy (the closest tertiary center to you, I'd think) or to Johns Hopkins in Baltimore?

On another note, though you've tried a number of anti-epileptic medications to control pain, you certainly haven't exhausted them, and beyond the opioid painkillers there are other meds such as the tricyclic antidepressants (i.e., Elavil) to try. (These are typically used to change neurotransmitter balances and help stop the pain signal propogation, and when used in this manner are used at somewhat lower doses than when used as anti-depressants.)

As I've said, it may be well worth it for you to come to a major center--I suspect the local MD's just aren't going to have the expertise.