NeuroTalk Support Groups

NeuroTalk Support Groups (https://www.neurotalk.org/)
-   Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)
-   -   "Patchy" small fiber neuropath? (https://www.neurotalk.org/peripheral-neuropathy/170695-patchy-fiber-neuropath.html)

mrsD 06-01-2012 01:52 PM

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

titanrules 06-04-2012 10:15 AM

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!!

Idiopathic PN 06-04-2012 06:17 PM

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.

bent98 06-06-2012 04:32 PM

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.

Apollo 06-06-2012 08:56 PM

Quote:

Originally Posted by bent98 (Post 886624)
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

Jomar 06-07-2012 12:10 PM

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!!

glenntaj 06-08-2012 06:24 AM

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

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


All times are GMT -5. The time now is 02:23 PM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.