While reading the thread on SilverLady's Mayo experience I read that Mayo doesn't believe the skin biopsy is a valid test for small fiber neuropathy.
Is that still true?
The only test I have had that confirms small fiber neuropathy is the skin punch biopsy . I will be getting some auto-immune testing soon from
a neurologist who trained in PN at Mayo.
However my current neurologist has based his diagnosis on the skin biopsy.
Does anyone have more information on this issue?
Thanks so much and for those of you who work so hard providing us newbies with resources and support. Thank you Thank you Thank you.

the 'dictates' according to a set of certain professional biases..... Is all I can say. If I didn't know any better, Mayo is jealous of Hopkins cause they got the idea for the skin biopsy first or something. Mayo has a distinct bias against it from all I've read. Go figger.
That your current neuro is open to the skin biopsy...go with him/her! Hopefully this next neuro will be 'educated' enough to back up that opinion.
New fangled things to more established docs? Well, they just don't have room in their memory banks to process.
I was lucky that the current protocols for my CIDP diagnosis no longer require the sural biopsy [which one neuro proposed{I think he just wanted to 'do' one?} and I refused-I was more well-read than he], Mainly the nerve conduction studies which showed rapid and steady deterioration and the spinal fluids analysis, showing definite increased immune responses.
BTW? I'm not dissing Mayo for all it's aspects, I had some of my immune analyses done there as well as from Athena Labs. Both were consistent in their findings that I had something.
Many waste a LOT of effort and energy looking for a 'cause', it's wiser to spend what effort you have looking at this site which is up in the 'stickies':
http://neuromuscular.wustl.edu/alfindex.htm Keep in mind that it will likely turn your brain into peanut butter...but slog on thru it as there just mite be one 'set' of neuro issues w/a name that is tailor made for you.
More important, VERY MORE IMPORTANT is that you get treatment after testing that can help you function better and with less pain. Be it medications, special treatments or physical therapies.
Of course, KNOWING WHAT YOU HAVE, putting a name to it, helps you! Keep in mind tho, that those around you are NOT going to GET IT! They have nothing to relate to this stuff in their lives as a rule. Other than watching TV shows and the like. Soo focus on diagnosis and ultimately treatments that work best for you. They mite not be all that good, but it's the best we have as of now and little seems to be coming down the medical pipeline anytime soon. Wish it were different.
Hope this helps and keep faith that you can be persistent enuf to get the rite diagnosis and treatments! 's - j

--well-done and well-analyzed skin biopsy results are as valid at test for the presence of small-fiber neuropathy as we currently have; the procedure is, in effect, pretty much accepted as the current gold standard to detect small-fiber syndromes, although the analyses will generally not reveal a cause, just that there is damage.

It is possible to have small-fiber symptoms and not have evident small-fiber damage on skin biopsy, as part of the sensitivity of the test depends on how patchy or widespread the damage is and from where samples are taken. But if small-fiber density is reduced in accordance with the McArthur protocols (and the work was done originally at Johns Hopkins)--that is, density is listed as below the fifth percentile, and there are symptoms, that pretty much cinches the fact that there is some sort of small-fiber syndrome.

Take a look at this:

http://www.medscape.com/viewarticle/563262_6

I can also get you to the original papers on the procedure, if needed, though many are available in the index of this article:

http://www.thecni.org/reviews/13-2-p07-treihaft.htm

Yes my skin biopsy was done correctly and sent to Therapath for analysis. I think that's the right name, to tired to get up and dig out the test. The results were below the norm " consistent with small fiber neuropathy".
I am or was a very healthy middle aged women who went to bed complaining of dry skin and woke up with pain , pins and needles( being dramatic here). Hence my search for a reason especially since the meds make me feel tired and stupid.
I just was confused to find Mayo didn't think much of the skin biopsy when all I've read was how definitive it is for neuropathy.
I think ,I think that if I find the reason then I can find a treatment as so far nothing helps. My closest friend is a P.T. and I used to work in a pain management clinic (Psy.) I don't think the clinic helped many people with chronic pain and I have learned so much since getting neuropathy that I cringe when I think of how little the pain clinic did for patients.

sorry to be a pessimist, but finding a reason for the neuropathy does not necessarily mean to better treatment.

My PN is caused by my lupus - I have had all the treatments available for lupus (including cytoxan and rituxan, the big guns) and it hasn't made any difference to my PN. Helps the rest of my lupus though.

So although it can be interesting to know what causes PN, it does not guarentee a treatment.

feel better soon

raglet

Thanks again I just became confused when I read Mayo doesn't do the skin biopsy.
I can't find any treatment that helps as the drugs just make me feel to weird.
Tried 25mg of lyrica last night ,slept well but all day today I was dizzy and actually had different shooting type pain I had not had before. But mainly I couldn't work as my mind was off somewhere else. Dangerous driving this am could not tell which lane the oncoming car was in so I couldn't pull out into traffic. Thats just to bizarre, I want my mind back!
So far the only thing that doesn't cause strange symptoms is lidoderm patches which don't always help.

to Mayo,not sorry I did but if I could have my do over's ,well perhaps
Hopkins. Thanks S. for bringing it up and the rest of you for being so wise,
and well read..You all know who you are.The sun came out in Mo.
Hugs to all Sue

Hopkins has a procedure for the samples to be taken locally and sent to them for analysis. You don't have to physically go to Baltimore to get it done. The dept of neurology at Hopkins can guide you thru the procedure, and how to get the sample kit.

Bob once again look how lucky we have NT. and you. If i'm not mistaken
don't you live near Hopkins? Yhe TV show gets a lot of reaction from Med. students to Drs.,interesting. Thanks again Sue