I have had the nerve biopsy and can tell you that numbness is NOT the only gift that comes with it. Because the nerve is severed, it can cause phantom nerve pain. The nerve cannot complete it's path...just like an amputee, so pain occurs beyond the point severed. And let me tell you, it can drop you to the floor in agony. I endured this type of pain for months before it finally eased up and then stopped.

As far as I know, they rarely use this test anymore due to the extreme invasive nature and permanent numbness (and pain) that occurs.

I would ask if there is any other means of ruling out the amyloidosis. According to the Mayo Clinic site, the biopsy they use for testing involve skin, salivary, abdominal fat, gums, and bone marrow...no mention of nerve biopsy. Are you sure they are talking about a sural nerve biopsy and not the skin biopsy to look at small nerve fibers?

--it is possible, at a sophisticated center that does skin biopsy, for that sample to be tested for amyloid (mine was out of my original series of skin biopsies at Cornell-Weill/Columbia in NYC--negative, fortunately).

As for further B12 testing, echoes is correct--once you are taking large doses of B12, homocysteine and methylomaic acid (MMA) levels would come down fairly quickly and would not indicate whether you previously had a deficiency. But I would continue taking the B12, based on your response--it has no known toxicity level and the large doses could help depleted body systems repair.

Thank you en bloc and glenntaj...My neuro just referred to it as a nerve biopsy and seemed surprised when I questioned whether there would be permanent effects. I'm cancelling the biopsy. I don't need anymore pain. I don't have the symptoms of vasculitis and amyloidosis is pretty rare from what I've read. I was planning on going to the Jack Miller Center for PN (Univ. of Chicago) after the biopsy anyway, so I'll just skip the biopsy and see what they say.

Have you considered gluten sensitivity? I believe it's the largest cause of diabetes and neuropathy.Your MD is not correct about the link between diabetes and PN. I have had pre-diabetes and severe neuropathy caused by it.

Steve, how do you know pre diabetes caused your PN???

I feel that may be my problem too but everyone around me, including my dr who doesnt even think I am pre diabetic or otherwise. But After buying my meter I definately am.

But I have not heard or found anything or anyone to say pre-diabetic numbers can cause it until you just said it.

Also, has it gotten better since treating your diabetes?

I have endured over 10 years of useless, expensive and painful medical tests, only to be told over and over that it is "idiopathic" with no discernible cause. Finally, a doctor I spoke to asked about gluten sensitivity; I had never been asked before. My brother was born with celiac disease, and it does run in families; not hard to connect the dots.
I did a great deal of reading on the subject; the most helpful is Wiliam Davis' book, "Wheat Belly." He states absolutely that the explosion of diabetes is caused by wheat; and he has the research to prove it. According to Davis, if you eat a lot of gluten, by around age 50, you will likely start to experience nerve problems.
Here's what's wrong with wheat:
1. The gluten tends to burn out the receptors in your gut that process B vitamins. That's why so many of us have deficiencies. I have just finished my 6th month of going gluten-free, and have hopefully grown back most of my receptors.
2. Gliadin, the protein in wheat, can breach the blood/brain barrier, causing a great deal of damage, as well as being able to penetrate the intestines, causing toxins that you would want to eliminate to enter the blood stream directly. Given that, you name a condiltion, wheat either caused it, or is making it worse. Diabetes and arthritis are almost a slam dunk.

I have not bothered with more testing. I'm fanatically gluten free (it was even in my shampoo), and I'm working on building up my system with large doses of B-12, as well as other supplements that the wonderful folks on this site have recommended. I have lost 45 pounds of excess weight, which has made walking, etc. much easier.
There is diabetes on both sides of my family, and while I was never diagnosed with it, it always felt inevitable. Now I don't even consider it possible.
I still have PN, but for the first time, I'm optimistic about improvement. And happy not to be making the medical establishment wealthy at my expense.

Good luck to you in your journey toward feeling better.
Steven

Ok I edited that since I followed some links on gluten and got the answer to my question.

--apparently have received the mutation that allows them to process wheat products well, but many people have not. In addition, the genetic modification of wheat (and to a lesser extent, barley and rye, other gluten containing grains) over the last hundred years or so may be contributing to the numerical rise in cases of celiac and gluten sensitivity--gliadin, the protein reacted to, is certainly present in higher proportions in "modern" wheat.

Not to disparage "Wheat Belly", but, in my opinion, the best source of vetted scientific information on the whole gluten area, including non-gastrointestinal manifestations of gluten difficulties, is still jcc's The Gluten File, the most massive database on the subject available, and linkable right through Neurotalk:

http://neurotalk.psychcentral.com/thread1872.html

jcc continues to update this on a regular basis, whenever new reserch material comes up. One can literally spend days here going from one article to another piecing together the possible manifestations of gluten sensitivity or celiac, diagnostic choices/problems, etc.

Hi Steven, How is neuropathy since going gluten-free? Have seen improvement? Isn't there a test for gluten sensitivity? I don't eat meat, so giving up gluten would be huge for me. I'd certainly be happy to do it if it improved my pain and mobility though.

Hey Stacy, I read an interview with a neurologist who said he frequently saw non-diabetic people with polyneuropathy that turned up with diabetes a few years later. It was ancedotal, but this problem is being caused by something. Keeping tight control on your blood sugar isn't going to hurt you. It's worth a shot. I hate the way MDs always say it's definitely not caused by something, when they don't know what is causing it.

Thanks FlyingSquirel! I definately believe that!!!

Im keep a close tab on it and can already tell that my feet hurt worse and burn worse when I go over on carbs and my glucose spikes.

I wonder if anyone with PN has gotten better by controlling diabetes...