Hi everyone!

I have been reading here since my weird nerve symptoms started in March of last year. Almost a year later and I still don't have an official diagnosis. I finally had a skin biopsy that just came back normal. I'm shocked since I was pretty resigned to the fact that I had some kind of sensory neuropathy and the neurologist who ordered the biopsy (Norman Latov at Cornell) was pretty sure too.

Last March I had tingling come on pretty acutely - first one hand, then the next, then toes then feet and lower legs, within the span of days. It peaked in intensity and then slowly went away and two months after it started it was 100% gone. I was terrified and went through many tests for MS (I am a 35 year old woman, otherwise very fit and healthy) which all came back negative. MRIs -brain and three spine-blood work, an entire physical with extensive blood work, everything normal. When the nerve tingling and burning (mostly feet) went away I forgot about it, figuring it was some fluke and it was gone. But all my symptoms came back this September and have stuck around since then.

I have since then had more tests with Latov, again all normal. I did get a high b6 reading so I've stopped any supplements with b6. I have tingling and weird sensations from feet up to thighs (mostly in feet) burning in feet and sometimes hands, and it's worse at night. I also get that buzzy feeling others mention. It waxes and wanes but is basically present every day off and on. I can't figure out too many correlations to what makes it worse or better - except after exercise it does seem worse for a while, but if "worse" ie more symptoms actually mean "better" when it comes to nerves is unclear to me! I have no actual numbness. I would say the burning has gotten worse since the symptoms came back this fall. I am still able to run (I train seriously and race-marathons to triathlons) and the symptoms don't affect any of my abilities, it's more that I am scared about the future and what this means. Also, it's annoying to have my feet burn and tingle - I am lucky that it doesn't cause bad pain, more sort of irritating sensations.

My skin biopsy was from Therapath and my thigh was 14.71 (abnormal under 8.3) and my calf was 6.45 (abnormal listed as under 5.4 and low normal as 5.4 to 5.9.) Sweat gland analysis was also done and was normal. I'm glad whatever is going on is subclinical at this point, but isn't that calf number a little low? Why is the calf number so much closer to the low end of normal than the thigh? Anyone have any ideas about these numbers?

I am so confused. It's been a year and I still don't understand what I have or what to do. The only other things that came up in my blood work was some mild anemia, since corrected, and the fact that my a1C was on the high end of normal. It was 5.2% Isn't that a little high for an athlete in their 30s??? I am thin, 113 pounds and 5'4 and have perfect markers for everything else, cholesterol, inflammation, etc. No gestational diabetes with either of my pregnancies. My mother does have type II diagnosed in her 50s but she spent her entire adult life very overweight and sedentary.

If anyone has any ideas I would really appreciate it or avenues I should pursue I am all ears. Right now I am going to look into the blood sugar issue and possibly get a two hour glucose test or repeat the a1c. As for the neuro testing, I guess I am at a dead end. I've been tested for celiac (neg) and Lyme (neg but I do live in an endemic area and run often in trails.) Thanks!!!!!

You might want to look at old posts under my name. My sensory symptoms started abruptly, were tremendously intense, and spread all over my body in a short time frame.

The punch biopsy from my legs was normal, however I have areas of upper body temperature loss. The neurologists at the teaching hospital had no clue. I've had 5 negative Elisa Lyme tests in the last 10 years.

I saw a Lyme educated doctor who ran a different test - iSpot. It was positive for Lyme, of course. I've learned that the Elisa Lyme test only catches about 50% of the cases. This test was never meant for the clinic - it was meant for surveillance in studies....so it was designed to conservatively identify Lyme. I was treated with antibiotics and my burning symptoms reduced after 2 weeks. I live in an Lyme endemic area also.

I think it's very reasonable for you to seek out another opinion for a Lyme educated professional. Many people develop numbness, burning and tingling from Lyme, Babesia, and Bartonella.

Sorry to hear about your woes. How were you tested for Celiac? If I'm not mistaken, it can only be tested for accurately with a biopsy, and then you'll need a GI who knows enough to take multiple samples from different areas when he sends the scope down. Celiac is one of the suspected caused for my SFN, but we can know if it's the real cause, since I've been off gluten too long already. If you're still on gluten, you might want to have that test done, if you already haven't had it done. I wish I had done it then, before I went off gluten. Good luck!

The gold standard for celiac testing is an intestinal biopsy with at least a half dozen villious samples taken from various locations. But one can get a celiac serologic panel done to see if anything shows up there. This consists of measurements of anti-gliadin IgG (the most sensitive but least specific indicator of gluten problems), anti-gliadin IgA, anti-tranglutaminase IgA (the most specifically associated with villious damage) and total IgA (because congentially low levels of this can skew the other tests).

I don't think that 5.2 A1C level is bad at all (I wish mine was that low). But if you do want to get a glucose tolerance test done I'd recommend a five hour one with draws for both insulin AND glucose done at half-hour intervals. You want to see what your starting insulin levels are--to see if you have a degree of insulin resistance--and then see the patterns of insulin and glucose rise and fall. Often pre-diabetics need to overproduce insulin during glucose challenge to keep the blood sugar levels in check.

As for the skin biopsy numbers, if you are developing a length dependent neuropathy, in which the nerve endings farthest from the center of metabolic processes are affected first and "die-back", you would have lower numbers from the ankle and foot area than from the thigh. Of course, the problem here is that you haven't met the fifth percentile cut off criteria for definitive diagnosis of small fiber neuropathy that, in my opinion, was rather arbitrarily set when the original norming was done at Johns Hopkins a few decades ago (see "McArthur protocols"--you can also search my name on this board as I've written a lot about this). We don't know, of course, what your numbers would have been if you'd had a skin biopsy before symptoms started--e.g., what your "normal" was--and if the current numbers represent a significant decrease from that. Fortunately skin biopsy is repeatable and another one a year from now, if symptoms persist, may uncover trend lines.

Given where you went (Cornell) I imagine they titred you up for a lot of the antibodies to peripheral nerve (and probably did the celiac panel too), but just is case, check you testing against this (since it was written by Latov anyway):

https://www.questdiagnostics.com/tes...ripheralNeurop

What might be the meaning of positive Gliadin IgG AB, when the rest of the tests are negative (Gliadin IgA Ab, IgA isotype of tTG, T.TRANSGLUTAMINASE, Deamidated Gliadin Peptide Ab) ?

I was tested because my sister was diagnosed with celiac, although I didn't have any GI issues, just very low B12.

I've had the celiac panel done several times, and once I did have that low IgA number which made me wonder if I DID have celiac after all even with negative anti-gliadin results. I had a biopsy ten years ago (looking for cause of IBS symptoms) which was negative. So I feel like this has been eliminated. Or was that too long ago maybe to show damage?

But from what I understand anything over 5 is considered increased risk. That corresponds to a daily glucose over 100! I was surprised I would be this high with my level of health and fitness. And since blood sugar and nerves are so connected I think I will look into this...

So do you agree the lower leg number is a bit low? I can't seem to find the numbers, to figure out what percentile that is.
Yes, I had all the antibody tests from Latov.
Thanks for the feedback!

Another weird thing with my history is the abrupt nature the symptoms came on...went away...came back. That doesn't really sound like a slowly developing diabetic neuropathy to me. It sounds like something either autoimmune, toxic, viral, etc. My symptoms were 100% gone from May to September (although now it's been September to January pretty steady with them.) I've read these boards a lot and haven't come across anyone with that weird pattern. I feel like we are all our own Dr. House in a maze with lots of dead ends.

Posts from a couple of days ago say that one method of biopsy testing allows degradation of samples by allowing samples to get too warm. Good Luck, Ken in Texas.

This is where I found some good information on Celiac Disease: http://www.thepatientceliac.com/celiac-basics/

She is very helpful and knowledgeable. If you haven't had a biopsy, and your sister has it, it might be worth looking into.

Stillhoping: if there is celiac in your family, and you have low B12 and a positive anti-gliadin IgG antibody--though that antibody result is the least specific, it is the most sensitive, often showing up first--it might well be worth the endoscopic biopsy.

Low B12 can absolutely be caused by celiac/gluten sensitivity. The most famous celiac poster in the on-line world, Cara, AKA jccglutenfree, found out about celiac in her family through low B12 levels. There may be deficiencies in other vitamins/minerals as well as absorprtion of these is compromised.

And, RunWriteMomHeal: that A1c level does correspond to a daily 100 or so average reading, but not a FASTING reading; that is the average of all your blood sugars over three months, including after eating meals. I'll bet your 12-hour fasting blood sugar levels are in two digits.

Pre-diabetic A1c levels are considered to start at 5.7 (used to be 6), frank diabetes at 6.5. I think you're relatively ok there.

Your 6.45 lower extremity intraepidermal nerve fiber reading is at the lower end of normal low, but not that low (about 20th percentile). The question is, what would it have been pre-symptoms . . .?

Thanks
What do you mean by showing up first ? Is it possible that the rest of the antibodues will turn positive later ? or the symptoms will appear later ?
I did the antigliadin IgG Ab test about 15 years ago. I repeated the other antibodies tests but not the antigliadin IgG because it isn't included anymore in the celiac screening here. Besides that test 15 years ago all the other celiac antibodies were normal.

Can a positive gliadinn IgG Ab indicate other diagnosis then celiac ?