This was extremely well said. I am going to save it and use it for the folks that "just don't get it......including some docs." I get tired of trying to explain why I hurt soooo bad when I look so good (healthy). Your explanation makes me think of the classifications for burns. 3rd degree burns sound the worst, but are actually painless because all of the nerves / nerve endings have been destroyed. 1st degree sounds harmless but is actually quite painful because the nerve endings have been damaged, but not destroyed.

Some questions for all you neuropathy experts. I started with pin prick/bee sting typed feelings all over body (head to toe), not at the same time, but with only 30-60 seconds between each other. This was May '09, July '09 internal non-visable tremor on one side in calf of leg. EMG's were perfect. Dr. suggested non-length dependent SFN, blew off tremor. Gave me Gabapentin 900 mg. a day, works very well for sensations, not for tremor. Fast forward to today......wormy feelings, wet feelings, other hard to describe sensations, still have internal tremor. Wouldn't tremor mean motor fibres involved, which would be large fibre and should have shown on EMG? Parkinsons keeps coming to mind, but there is not test for it. By the way, I have had Spinal Tap,3 MRI's, lots of blood tests........nothing found. Do your sensations stop when you are sleeping, mine do, but start the second I awaken.

Any insight would be appreciated........I am confused, scared and annoyed to say the least! I am 52 years old.

a noted calcium depleter, which can cause or make worse muscle tremors
Prescribing info as follows:
http://www.pfizer.com/files/products/uspi_neurontin.pdf
Pay attention to any mineral depletions [usually in disguised terminology] and or muscle tremors.... This mite help you be aware of what 'might' happen? But likely doesn't for most.
Go further up in the forums about Supplements and look up what's been discussed there. Calcium w/a balance of Magnesium and Vite D can and does help those tremors [I am a personal beneficiary!] But finding your balance of all you need, takes TIME! That means? Taking such a combo for a week is NOT gonna do the job? Try a month or two!
Having had a neuropathy soo bad at one point, that I COULD NOT FEEL A THING FROM MY FEET TO MY WAIST? And from my fingertips to mid-upper arm? Tho I can 'tingle'? And tingle badly at times? The fact that there ARE TINGLES/BURNING/HOT/COLD/ITCHES etc. are wonderful! Senses are essential to part of our BEING, as is SEEING, HEARING and SMELLING or TASTING! It is strange when you lose part of any one sense, let alone more? Meds tho can impair others too...in the attempt to 'get better'. Being aware is being prepaired!
I had the blowtorch and the nuke-freezer applied to my feet and hands simultaneously. So I DO know what you are going thru? It's scary as heck!
Read all the stickies and keep asking questions!
The MRI's are on target, good, no real 'physical damages'? The spinal taps? Tho? Depends on what they tested you FOR! There is a whole menu here:
http://neuromuscular.wustl.edu/alfindex.htm Go thru this index and all that is there? Be sure to have another web page available to 'look up' the med terms. Go from there and see which one 'fits' best for YOU so far.... THEN Don't be shy and ASK more questions! WE all here, keep asking them, and then ask them again!
DO NOT, EVER GIVE UP! If you do? You have let your docs give up on you. FIND docs who won't give up on you! I did! You can, and many others here have too! Ask, yourself? Were they the right tests? Then, harder still...DO you want to KNOW? I know I did, better to have a name/names for what I have than give up on ME! I hope you won't give up on YOU! I know you are tired going on the doc and test merry-go-round? I view it more like riding a roller coaster thru a thunderstorm! [And I have-don't ever want to repeat THAT] At Time tho? You have to do the 'stuffs' to get any rational answers, the right tests, then the right help! KEEP FIGHTING!
BTW? I can 'feel' to degrees 75% of that was 'dead' from 'before'. I DO consider myself very super lucky indeed! Hugs and HOPE! !-j