Just a 'poll' of sorts for people who've had least (1) small fiber neuropathy skin punch test at anytime in the past?

1) Which testing lab?
2) Where was your sample taken from?
3) Your diagnosis before or after the test?
4) Your result (just pos or neg) and/or results for multiple tests if done more than once?
5) Has anyone had a sample taken from an area 'other' than the typical areas suggested in the test kit?

For those that want to share info, just do the best you can from memory, I'm not grading these


By the way, here's my background if anyone's curious? I've had a totally negative skin punch in 2010 which was diagnostic for the feet (punch from side of one calve). I've had burning/tingling symptoms since 2005/2006. Started in soles, can now affect much of the REAR of my body upon contact usually including sitting/lying down. I have near normal MRIs from brain to lumbar. No known cause for my sx's, although an old infection is most suspect. I have NO motor/strength problems, just neuro pain issues, this all became troublesome around age 36. Just trying to find a med or combination that will give longer duration on my feet with less pain Gabapentin is the only drug I've taken for extended times and it's not doing much - looking elsewhere for better relief in 2012!

Regards,

JB

Had the test. It was neg. test submitted to NY lab., not mayo. Taken from near ankle and upper leg. No diagnosis before or after . Suspected sfn but neg test results. Have full body neuropathy.

Thanks for your reply BigDaddy

I'm guessing your sample was sent to Therapath? They're a NY lab and I wonder how many there could be?

You mention full body neuropathy. Do you have abnormal sensations 24/7 without 'any' contact bringing it on?

When your neuro pain is so widespread, have you considered it might be coming from central nervous system vs. the peripheral, I only question this since you had a neg SFN test.

Do you have any hunch what might have caused this? How long have you been dealing with it? Did the problem start in one area and then spread?

Don't feel obliged to answer any, just trying to trade experiences etc to help myself and others.

Take Care, JB

I had the skin punch biopsy done a year ago, from the ankle and the upper thigh. Done at Therapath lab. It was negative. I also have full body burning, parasthesias, and itching. No official diagnosis, but Dr. suspects possible SFN. I have no loss of sensation anywhere and also have mild Erythromelalgia in feet and face. I've had all these sensations for 18 months. I still do not have my symptoms controlled with meds. My Dr. said it can't be CNS because I have normal MRI of head and neck.

Skin punch at Johns Hopkins. Samples from ankle, above knee, and upper thigh. Positive. No discernible nerve fibers at ankle, reduced above knee, segmented and breaking down at upper thigh.
Hopkins has their own lab- results say Cutaneous Nerve Laboratory.
I have both small and large fiber neuropathy with muscle degeneration, CMT type 2, hereditary neuropathy.

My neurologist sent me to my local dermatologist who took the samples according to the kit sent from Hopkins. Then it was sent there for analysis. Mine showed something with my nerves but was negative for SFN.

--as I am followed by the Cornell Weill Center for Peripheral Neuropathy in NYC.

My first skin biopsy was 7/24/2003--about three months and change into my acute onset, body wide, burning sensations. Samples were taken from just above left ankle and upper left thigh. Results showed significant intraepidermal nerve fiber density reduction in both spots, down to about two percent or "normal" density as determined by the original McArthur protocols at Johns Hopkins (the place the norms were established some years back). There was also significant swelling and overbranching of the fibers that were there, consistent with small fiber damage.

The analyses were done at the Columbia Presbyterian pathology labs (Cornell is affiliated with that system).

Since then, I've had two more biopsies done, one in late 2006 and one in early 2009. Same locations for comparison. Second one showed I was up to approximately eleven percent of "normal" intraepidermal nerve fiber density. Much less swelling. The third showed I had reached the eighteenth percentile, and nerves looked fundamentally normal. So I had gotten significant regeneration over the years, though there's no telling what the density numbers were like BEFORE the initial attack--results are consistent with a monophasic molecular mimicry autoimmune reaction, though. (As a point of reference, there's significant variation in individual nerve fiber density--McArthur defined "abnormal" as above the ninety-fifth or below the fifth percentile of the original control subjects tested, but that may be too narrow a definition--I can certainly see situations in which someone who may have been at the seventy-fifth percentile in youth comes down to twenty-fifth, for example, after developing neuropathy, but such a person would not meet the criteria for abnormal density. It's why they are supposed to look at and report the condition of the fibers as well.)

Could you explain what you mean by full body neuropathy. It sounds like what I am experiencing.

Just a 'poll' of sorts for people who've had least (1) small fiber neuropathy skin punch test at anytime in the past? My answers in bold.
I have had one punch test at Mayo Clinic in Scottsdale two years ago.
1) Which testing lab? Therapath
2) Where was your sample taken from? Outside (lateral aspect) of right ankle and hip.
3) Your diagnosis before or after the test? I had an unconfirmed diagnosis of small fiber peripheral neuropathy that was confirmed with the test.
4) Your result (just pos or neg) and/or results for multiple tests if done more than once? Positive 50% reduced density of small fiber nerves at the ankle, statistically significant reduction at the hip as well.
5) Has anyone had a sample taken from an area 'other' than the typical areas suggested in the test kit? No comment.

I hope that you are able to find help. For me getting a confirmed diagnosis didn't really help with my treatment. All the medications that I have been tried on have had unbearable side effects. The confirmed diagnosis helped me not feel so crazy with all the weird sensations I was experiencing. I was glad it was not something worse. I was disappointed that with all the testing I had a Mayo a specific cause was not identified. The additional tests may have helped with my disability case.

I had the skin punch biopsy. At my neurologist office. It showed significant reduced density of small nerve fibers. The samples were taken from near my ankle and my upper thigh area. I also have full body neuropathy.
Teacherfeet, I can tell you what I mean by that. I have burning, parasthesias, and itching. The burning is in my feet and hands. Itching is the worse in my bicep area bilaterally. The only place that is spared for me is the left side of my face. Although, that seems to be coming across my nose. Hope that helps!