Another Tough Question For you......
 

As we know SFN can involve burning in feet and hands, I have talked to people who have had to stick their feet in ice water out of desperation. Does this mean if one has Non-length dependent SFN we will be burning from head to toe?!!

HELP!!!!!I think I am really starting to scare myself now!!!!

I certainly did--
 

--and it took 2400mg/day of Neurontin just to enable me to sleep and wear clothes again; I am glad it worked for me.

Glan
 

and do you still take it? or the burnning just stopped?

The odd thing is, my sensations seem to stop when I am sleeping and clothes or bed sheets do not bother me at all.

How long did it take (years) to progress to this point for you.

Mine has been a year and I am on 900 mg. of Gabapentin.

Are all areas of your body affected?

I am one of the cases that has has very little burning, but baaaad dysautonomia....PN is not predictable, or consistent.

My burning--
 

--gradually decreased from about the six-seven month point of my acute-onset body wide neuropathy, but very, very slowly.

About two and a half years in, I started to wean myself from the Neurontin--again, very, very slowly. It took almost a year of graduated down regulation (under physician supervision) to get down to zero. Each time I dropped the dose, I had a little rebound in burning--expected, as the body downregulates--that would eventually fade.

This all conincides, by the way, with repeated skin biopsies indicating that I was getting slow regeneration of the small fibers (though I am unlikely to ever regenerate completely to where I was prior to the whole escapade--they do follow me as a sort of interesting clinical case).

I still get some intermittent burning from time to time--some "flares"--but I'm probably about as back to normal as I can ever be, now seven and half years post initial attack. But, I am vey prone to parastheses and such over many parts of my body from compressive forces of any kind--even muscle building from weightlifting, or walking without well-cushioned shoes (or, this summer, heavy swimming), likely as a result of my re-enervation happening in very different patterns that my original one. Fortunately, these tend to be relatively temporary--hours to weeks--before fading to background. But they are very annoying. And sometimes bigger injury can cause symptoms to go on much longer--I recenetly had a bout of pudendal neuropathy that when on for about 9 months, and which has only recently faded, with the help of a LOT of physical therapy.

I no longer take any meds, but am on a host of supplements (r-lipoic, magnesium, calcium, B-vitamins, especially methylcobalamin, Vitamin D).

Thanks for all the info.....I definitely look like a non-length dependent sfn case in my mind, I am going to ask for the skin biopsy tomorrow when I see the neuro, just to confirm.

I did wonder though....can any motor involvement be included at any level? The reason I ask, I have muscle faciculations, quite a few, more than "normal" people have. And sometimes feel a slight internal tremor when I awaken in the morning. No weakness though, and my EMG was perfect last year.

I am starting to fear the motor aspect moving along as neuropathy progresses, because of weakness, etc......Scares me!

Mine is idiopathic......all this paresthesia, etc....happened overnight, for no reason! Hard to accept, no reason, I keep thinking they missed something!