--and some facilities do them far too often when they're not indicated (insurance reimbursement, I'm sure, plays a part here--get that money--as many more plans will cover the more extensive surgery of a nerve biopsy than a skin biopsy at this time).

Nerve biopsies are supposed to be done along with muscle biopsy and only if certain conditions, such as inflammatory vasculitic autoimmunities or specific hereditary neuropathies with characteristic degeneration patterns, are suspected. They can sometimes confirm such suspicions, but often don't reveal causes that are toxic or metabolic.

See:

http://neuromuscular.wustl.edu/nother/bx.html

Wow! You ARE smart. Thanks very much for sharing that treasure trove of knowledge. People like you and some others who post/reply here are invaluable to the rest of us.

Sheltiemom

a very last resort? Many insurance companies these days don't cover their costs anymore due to the probabilities of infection, plus the total loss of nerve function in that nerve 'line'.
I'd discovered this over 5 years ago, upon seeing a 'new' neuro who was gung ho to do that sural biopsy.... I'd read lots, and It'd seemed I'd passed all the criteria for the treatments I was getting. Thing is? This neuro simply seemed too EAGER? Almost as if he wanted to 'get one' done before they couldn't 'be done' easily any more. This neuro referred me to his 'mentor', head of a local teaching hospital's neuro dept. And he questioned my treatments as well as my diagnosis. So I referred him to sources for diagnosis, stating that: Blood work, spinal tests, nerve conduction studies, history, MRI's, Ct's, and a few other aspects for diagnosis ...aside from a biopsy of any sort indicated my type of neuropathy... He wrote that 'new neuro' and sent me a copy of his conclusions. He'd agreed with me, having done his homework as well. BTW? I'm back to the neuro BEFORE this new guy! Wonder why?
While this is an old article? It's charts are pretty clear [and in line w/Liza Jane's lists] in terms of 'If This? Then Test THAT'. Ergo? IF it walks and quacks like a duck? It could be a goose, maybe? In part? You are going to have to be your own detective in narrowing down what you think you mite have... And then hope you and your doc can go in the same directions!
Then, don't forget? Docs change their minds daily about some things, and who knows why they do so? Sounds as if you've got a few other tests to go before getting to where you need to be for treatment! With out the most key of tests AT the times things 'started', and then progressed. There is No way you can truly find out CAUSE. Settle for good treatment that helps you get on with life! Hugs and hope! 's!!!!!! - j

Tom,

I've been struggling with neuropathy for 2 years now and they don't have a clue to what is causing. I went to Johns Hopkins in Jan of this year and they did MRIs, EMGs, more blood work than is reasonable, 13 vials of blood - I asked the nurse drawing the blood if she was going to leave me with any, & a skin biopsy. All normal. I was told all that can be done is to treat symptoms. I've been on 4 different meds and they work for a while and then it gets worse. I'm going to the JH pain treatment center the end of Sept to see what they can do. I share my experience just to let you know that I understand and share your frustration.

Been there, done that! When I went to Mayo Clinic, they took 19 viles of blood. Jeepers!

My latest B12 ckeck was on 3.18.10 and it was 1038. However, let me go back in time a little.

In October of 09, I made my initial trip to Hopkins in an attempt to find a cause and actually to confirm that I really had SFN. Using a scale of 1 to 10, with 10 being the most painful, the bottom of my feet were probably at a 4 at that time. They confirmed the SFN and their blood tests showed my B6 at 117, which is quite high. How did my B6 go from 47 to 117 in a matter of 5 months when I didn't change my daily routine? Anyway, they suggested I stop taking my B6 supplement (Coenzymated B6, P-5-P, 25 mg/day).

Came back to Atlanta, stopped the supplement, and tested the B6 on 1.6.10 and it was 23.1 and my B12 was 1223 (note the drop on B12). I also had lumbar decompression surgery on 11.30.09. The stenosis was severe and the neurosurgeon thought that the nerves may have been compressed.

I tested again on 3.18.10 and the B6 was 28.9 and the B12 was 1038 (again, note the B12 drop). At this point, my feet are still at a 4.

On 5.3.10 I had my yearly physical. My B6 was 67.6 (again, why the increase in B6?) My B12 was not checked. Feet still at a 4.

Remembered that I was still taking a Multi-vit that had B6 and B12 in it. I stopped them completely and retested the B6 on 6.25.10, it was 11. Feet still at a 4.

So here I am now in Aug and the bottoms of feet are about a 9. I am presently, and always have been for years, taking 2 mg of Methylcobalamin sublingual daily. Since I was taking 2 multi-vits daily(which have about 8mg of B6 as pyridoxine hydrochloride each and about 33mg of B12 as cyanocobalamin each), I started taking one of the multi-vits daily thinking that it might raise my B12 somewhat and also the B6 a little? Since I haven't had the B12 tested since March, I probably should have it tested along with the B6?

I didn't mean to ramble on but just wanted to give you the whole story. I just don't understand why the sudden huge increase in pain level? This is the first time in 14 years that the pain level has increased so dramatically. Could the nerves be healing from the decompression surgery? Thanks for listening and any thoughts and advice are welcomed.

Regards, Tom

It seems to me that a lot of people with SFN had spinal issues first.

If you don't mind sharing, which doctor did you see at Hopkins? I saw Cornblath in Oct. of 09.

I saw Scott Newsome

Tom,

My SFN started with a West Nile Virus infection. It messed up my immune system so much that I got several other viral infections over the next few years that my body is having trouble fighting including Epstein-Barr, Cytomegalovirus (strong association with neuropathy) and Parvo Virus.

I'm hoping my neurologist and immunologist will work together to get me on IVIG treatments because I know mine is primarily viral induced.

Jan