"Patchy" small fiber neuropath?
 

Hello again,
After yesterday's visist with the Neuo-muscular dr that performed a skin punch biopsy, I have more questions than answers and I am hopeful that. Someone here may have answers to. As I had posted earlier the results of the biopsy was that I have SFN in my feet, but the biopsy done on my calf has none. My question is can SFN be patchy? Ie. I have burning in my feet, arms, trunk, back, neck, throat and mouth and. Sometimees it feels like I am burning inside my skull. The last one is a rare eoccurance (thank God). I do no have burning in my calf. Is it possible to have SFN show up in feet and arms but not calf? Orr does it follow a connected path. The dr said. With results only showing in feet and not calF means there is no SFN amywhere else but my feet.
Thank you to anyone that replies. This is all so confusing!!

I answered you on your other thread:

http://neurotalk.psychcentral.com/sh...538#post884538

The skin punch biopsies are only a snapshot in time of your
nerve densities. And you don't know what you were before the test and before the PN symptoms, to compare to. This test does not show what is attacking the nerve endings.

Glenntaj is our experienced poster on this topic. Here is a link to some of his threads:

http://neurotalk.psychcentral.com/thread168511.html

You could also have some damage in the dorsal root ganglia along the spine. Only a special MRI will show this:

http://neurotalk.psychcentral.com/thread147771.html

In keeping with what Mrs. D says--
 

--it would be interesting to know exactly what the average nerve fiber densities are from each of the samples that were taken, and what percentiles compared to "normals" they fall into.

As the other thread Mrs. D refers to you indicates, there are some inherent measuring biases in the diagnostic determination of "small fiber neuropathy", in that, according to the original protocols developed at Johns Hopkins, the density levels are not labeled definite neuropathy unless they are below the 5th percentile or above the 95th percentile (and usually it's the former). So you could even have a reading in the 6th percentile and the lab report would not likely come back with a specific neuropathy diagnosis.

I've made comments in the other thread about how the weakness of this rubric is that as a snapshot in time one does not know how one's current average intraepidermal nerve fiber density compares with what one had before symptoms, as no one goes for this test without symptoms. People do "start out" at widely varied levels. This is why part of the report is also supposed to indicate the condition of the nerve fibers as perceived under electron microscopy--are they swollen, frayed, excessively branched, etc.

From several posters here in the recent past it doesnt seem that they are putting that information about the condition of nerve fibers in the reports all the time or maybe even most of the time. The several people who reported this i recommended contact the lab and see if they could get that additional information forwarded to them but those posters never posted on wether they tried or not. I would hope the lab would have recorded that information and kept it.

Hi Echoes,
I have been trying to get the telephone number of John Hopkins from my doctor's clinic but to no avail. During my last visit to the neuro who did the skin biopsy, he gave me me a vague response about my interest in knowing exactly the "numbers" of my nerve densities, whether there was excessive branching, swelling, etc. He was forceful to say that I dont have a peripheral neuropathy (this is everytime I made reference to my condition). I dont know how to contact the lab because they were asking for a reference number. It is frustrating. Doctor does not want to pursue other tests and does not even want to give a follow-up skin biopsy in the future. Now, I am left with no firm diagnosis while my symptoms are more than when it started 7 months ago.

the first thing you need to do is find a new doctor, but i think you know that already.
did you get a copy of the test results? there should be some information on there that could be used to ascertain contact information.

I already requested for another doctor, but I am still waiting for the approval from my insurance as this will already be my 4th neurologist.

I tried calling the Cutaneous Nerve Laboratory of John Hopkins to inquire, but they were asking for a reference number from my doctor. The more I read in this forum how important it is to know the exact nerve densities and other hints on my nerves that could help in the diagnosis, the more I am frustrated dealing with the uncooperativeness of my doctor's clinic. Though, my written report from John Hopkins states : "The epidermal nerve fiber density and appearance are within normal". The word appearance gives me some consolation that this may mean that my nerves do not have swelling or branching. I am not sure, though. I am just trying to console myself with this positive thought when I feel so uncertain and anxious.

Keep in mind, if your problem is happening at the dorsal root ganglia level, the skin punch may be normal.
The skin punch biopsy only shows the end points of the nerves.
The dorsal roots are the ganglia along the spine, where sensory information is processed, and transferred to the brain. These can be damaged by toxins, toxic drugs, viruses, bacteria, trauma, autoimmune attack etc.
http://neurotalk.psychcentral.com/thread170562.html


Only the new MRI procedure outlined by en bloc can say for sure with this problem. It is difficult to get this diagnosis, and treatments still are lacking for it.

I posted some of that information on Clay's post.

It may be that the lab only needs your Johns Hopkins Clinic number...as the reference number. Everything at JH is filed under the individual's clinic number. You should have this on any clinic note, lab, etc.

Ideopathic under HIPPA you are entitled to a copy of your test results. Those test results may have the reference numbers you need. Call the neurologists office and remind them that under HIPPA they must provide them to you.