Has anyone tried alphalipoic acid? I am just starting to use it to recover from a B deficiency neuropathy. I was so inflamed it affected my metabolism. I would like to know if someone has had success with this. I recently found out that I have celiac disease.

I started taking alpha-lipic acid--600mg/day, in two divided 300mg/day doses--very early in my neuropathy (which is body-wide, acute onset, burning small-fiber predominant). Of course, on the advice of many on these and other boards, I was taking many other vitamins/supplements as well, so it is hard to tease out the effects of alpha lipoic from those of others, but I do believe it does help with small-fiber types of nerve pain.

In Europe, alpha lipoic has an extensive history of being used for diabetic neuropathy--in fact, in Germany it is a prescription item--and there have been some studies that show effectiveness. These studies, though, have used larger doses than I was taking--often in the 1200mg/day range--and the best effectiveness was for intravenous, rather than oral, dosing. (The evidence is spottier for smaller doses taken by mouth.)

One of the discussions that generally comes up with alpha lipoic is how to take it--it is an acid, and some people have trouble with that gastrically (I take it with meals, and that seems to buffer)--and whether to take it in seperate doses or in one large dose each day (there are differing opinions as to how bioavailable it is). One newer development--I now take the "second generation" R-lipoic acid, which is created from the active isomer in alpha lipoic acid (alpha lipoic is composed of two mirror-image molecule shapes, but only the "right-handed one"--the R--is bioavailable for most people); this enables me to take less for the same effect. (Most people say that the ratio is in the range of 6:1 to 10:1--one can take one-sixth to one-tenth the amount of R-lipoic compared to alpha-lipoic; I now take 100mg R-lipoic daily. Helps with the acidity issues, too.)

One thing--lipoic has significant blood sugar lowering properties; this is definitely a consideration for diabetics, especially those on glucophage or other meds. One's blood sugars should be closely monitored to make sure that the lipoic does not have synergystic effects that drive blood glucose levels too low/lead to hypoglycemic episodes. (But you can see why it has been used by those with impaired glucose tolerance who would like to avoid strong meds.)

If you had body wide neuropathy does it cause your tissue to heat up, especially at night? Was it in your GI tract and do you get dehydrated? I am curious as to what other vitamins you take. Maybe it is none of my business as to what caused your neuropathy, or how disabling it is. I had one before but it wasn't nearly this bad. I usually wake up drenched in sweat. How has your recovery been?

--for peripheral neuropathy tell it, I'm a rather rare/interesting case. (Couple of Hopkins researchers think so, too.)

My presentation was atypical--most analagous to a small-fiber sensroy Guillain Barre. On April 12, 2003, I felt a small tingling in the bottom of my right foot, between the fourth and fifth toes. In four hours, it had gone from that to a searing, burning pain all over my right foot. In three days, it was in my hands, and by ten days, when I finally got in to see a neurologist (the first of many), it had progressed to myentire body--a searing, burning, touch sensitive pain that can only be analogized by imagining a body wide sunburn that someone had rubbed with steel wool. Needless to say, I had not been sleeping, working, eating--clothes, sheets, all was agony. Fortunately, Neurontin was prescribed, and I began to gain some relief from the first dose, though it was weeks before the dose was increased enough for me to be functional.

In teh meantime, I wa subjeted to a HUGE battery of tests--what doctors were looking for was MS (forty-three year old guy with sudden body-wide sensory parasthesia/dysesthesia/allodynia--that was the suspicion). But all tests were normal/negative. I was able by then to do research into the possibilities, and began to suspect that this was a peripheral, not central, nervous system problem, probably of the small fibers, but the local neuros were clueless about this possibility, and I went to several, at each trying to drive the test protocol further. I finally got to the Cornell Center, where I finally got two test clues--the center's own ganglioside agglutinin test, a test of gross autoantibody activity, showed a slight positive, and a skin biopsy to look at the small, unmyelinated nerve fibers (the ones that subsume the senations of pain and temperature) indicated severe damage and 2% of normal fiber density. I was happy at least to have some evidence this was not "all in my head"--and, in fact, the symptoms were consistent with the damage pattern. (I'd had quite normal nerve conduction studies and EMG's, but those can only measure gross damage to larger fibers.) Problem was, while my nerve damge wa now documented, there was no indiction of how/why it had happened. Best available theory, still, is that I had some sort of post-infectious autoimmune molecular mimicry process over days/weeks.

The good news about this is that it seems to have been monophasic. I have been followed almost four years now, and subsequent skin biopsies have shown I am slowly regaining some nerve fiber density (I was up to 11% on the last one--it's unlikely I'll ever get near average, though). My symptoms are somewhat reduced--especially over the last 18 months, they seem to be gradually easing, though I am still prone to "flares" and intermittent "flashes". I've actually cut down (gradually) my Neurontin dosage from 2400mg/day to 1600mg/day over the last year.

Since the ealry days of this, thansk to many of the people I've met on boards such as that of the Neuropathy Association and Braintalk, many of whom have migrated here, I have taken significant B-vitmains, seperate methylcobalamin B12, alpha-lipoic (and then R-lipoic) acid, cosndierabel fish oil, magnesium chelate, and additional zinc. I also tried acetyl-l-carnitine, though I did not notice any positive/negative effects from that. I find that the B-vitamins have helped my energy and probably the shooting pain to a certain extent. I have used them and the lipoic primarily to reduce oxidative stress in the body. Moreover, I have gone on a gluten-free diet (with occassional slips) and tried to eat a diabetic Zone type of diet; though I have never been measured with serologic gluten sensitivity or impaired glucose toleracne, I am insulin resistant and, like many others have reported, have sometimes noticed neural symptom upticks after heavy sugar or gouten intake.

My condition has left me very prone--much more prone than normals--to compressive neural damage. I am currently fighting a C6/C7 right radiculopathy that has been helped somewhat by traction, and a left elbow ulnar slight numbness that I tend to cause/exacerbate by bad sleeping and computer positions (I'm making a big effort not to lean on it as I type right now).

I have been tested for autonomic effects--many people with small fiber syndromes do have these, though they are often sublinical--but my systems seem to be functioning within normal parameters. I may not be a good guide in this area, though--a long history of running left me with a slower than normal heartbeat (though I haven't run in a long time, I do walk and swim a lot, and it's still slower than most guys my age/size report--I have to explain this to doctors) AND I have a long history of biofeedback training (well before the neuropathy) and have some degree of control over my blood pressure , skin temperature, and heart rate. I suppose the fact that I still can control those to a certain extent means my autonomic nerves are not greatly damaged.

Hi everyone,

I don't really know what to say except that my name is Todd, I'm from California and I suffered from somthing called neuropathy for 15 years. I'm OK now, thank God, since I have been prescribed a drug called neurontin.