"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.

I'm making a skin punch biopsy thread on the SubForum.

It has some links to Glenn's posts, and today I found some more
sites on the web, with photos showing nerve fibers decaying.

Having a picture might help with understanding.

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

Thank you very much!! But still confused
 

:confused:[QUOTE=mrsD;884710]I answered you on your other thread:



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:

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

:
Hello and thank you!!
I have visited and read all of the threads you sent. Thank gooodness for alll theses people sharing their knowledge!! What confuses me is that the neuro I saw only did the skin punch biopsy on my top of foot and ankle when almost all info I have read is that there should be 3 sites. Also, when this burning skin pain began it started in my arm then went to my upper back, eventually spreading to stomack skin, throat, neck face and even buttoks. The Last place tob hit is my feet. The skin in all areas that burn have become loose, dry and wrrinkly. I pinch the skin on my arms which is at times the worsts for burning an the skin stays pinched. With the burning pain starting in this order(instead of feet burning first) most med sites indicate non length dependant sfn. How do they categorically deny connection between these parts of my body without doing the third site biopsy (only top of foot showed SFN. He has rx'd methotrexate and folic acid. I am aware that some drs have made notes in my file siting "psychogenic" reasons for my pain so I am very thankful this dr even agreed to see me and test me at all. (Hopefully even partial dx of sfn helps to clear me of "nutbar" title. I don't see him again for 3 months. CAn anyone help me as in what to say (about having 3rd site done to see if it is non-length dependant SFN? I don't want to come across as a know it all when he is surely the best in our area. I am very anxious when it comes to talking to drs due to them thinking it's in my head. Some have even gotten angry with me for asking questions - includng this doc when I said I was confused that it showed SFN only in my foot. ANY suggestions on how to broach this would be immensley apppreciated!!

My symptoms are both in my feet and my arms. When I failed to take my gabapentin, I also feel the symptoms in my back and a little in my face. These symptoms came all at the same time and not the typical PN symptoms that start in the feet and go up.

Like you, I also had only two spots for my skin biopsy: one is from above my ankle and another is from my thigh. The result was normal but my symptoms are so bad.

I know this does not answer your concern on how to tell your doctor about taking another punch from your upper body. But, this is to let you know that you are not alone in having only 2 spots for hte skin biopsy despite having symptoms all over the body.

I hope that we can all find some relief from this horrible and life-changing pain.

There is no way for them to do anything useful for a skin biospy of your upper body. I am in the same boat as you. I am burning in my upper back and sometimes neck and shoulders. I have seen countless doctors and am trying to get the pain under an acceptable control level that I could at least feel somewhat normal again.


I sent you a private message if you want to talk more about it.

"Therapath" (therapath.com) has always been where I go for my skin biopsies!

David

A reply from titanrules
 

I posted this for member by request.

from titanrules :


Thank you very much for your information!! I have done some more reading...and hope you may have sugggestions oon how to handle this. During my appt with the dr. When I told him I was confused how all the burning pain in my upper back, arms etc. Is not SFN yet it shows SFN in my feet, he said that no matter where in the world that I went to would it Show SFN is the. Reason for that Pain. Yet, after. Rreading more, it seems to me that when the Burning skin pain begins in the upper torso(back, arms, throat, etc). It is usually caused by NON-length depandant SFN which shows when biopsy is taken from the thigh and arm!! The only place I was was biopsies was the. Foot and ankle. Almost all info I have seen they recommend 3 sites be biopsied for this very reason- it would confirm NLD SFN, which would explain the burning in other parts of my body bessides the feet. My question is how do I approach the dr about doing another biopsy? I have been told he is the best in Ontario, and I do not
want to appear that I think I know more...I am sure in reading my history there is many who think I am faking it, and because of previous issues with my leg weakness and abnormal Evps on them he may have missed that THIS pain started in my back.I don't see him for 3 months( to see how I make out on the meds he has rxd, and is thinking of doing a lip biopsy forr Sjorgen's Syndrome. But I also read that many with NLD SFN do not havE Sjorgen's. I am very intimidated by Drs and reallly don't know whether ii should try to discuss this before my 3 mth appointment, then he would need to book another biopsy(IF he agreed) and then wait again for those results and another appointment. Any suggestions are welcome and thank you for you help!!

Suggest that the doctor--
 

--look at the Washington University Neuromuscular database, especially the section on neuronopathies:

http://neuromuscular.wustl.edu/antibody/sneuron.html