So discouraged
 

I got the results of my skin biopsy today and I do not have small fiber neuropathy. I was so wishing to finally have a diagnosis for my all over body burning prickly pain and parasthesias. Where do I go from here? I feel so helpless to help myself.

What exactly did the report say--
 

--and what were the numbers?

As I've said in previous posts, sometimes the strict adherence to the fifth and ninety-firth percentile of intraepidermal nerve fiber density for getting a diagnosis does nt catch everyone, especially those in an ongoing neuropathic process or thsoe who mayhave had a significant reduction but wouldn't know it as there is no baseline to compare to . . .

I wish I could help more but just wanted to let you know I understand. I have some undx going on and it is frustrating and hard to face. On a side note my 1st emg/nc did not show anything and then my 2nd one a few months later did show PN. I have heard others have similar.

All over body pain and parasthesia is what throws it....

Allergy testing?

Some kind of CNS thing?

The report my Dr. gave me, via email, did not show any numbers. It just said no sign of nerve fiber reduction. Results normal. I emailed him back and said I want a copy of the exact report they sent.

I know the feeling. I got the same results from my skin biopsy in May. At the time the pain/burning was confined to my legs but now I get it all over my body. I was told that all they can do is treat symptoms and they are not doing that very well, at least yet. My diagnosis is Idiopathic polyneuropathy.

http://www.hopkinsmedicine.org/neuro...europathy.html

I go back to Hopkins next week to see what else I can do. I also need to get some testing for autonomic neuropathy as I am getting those symptoms also.

I've seen 2 doctors and neither of them will even give me a diagnosis. Funny how some docs will still diagnose it as neuropathy without a confirmed test, and others will not.

I find that I'm having such a hard time even finding a dr. who knows what they are doing. I've had to ask for all the tests myself. These neurologists seem to be clueless.

Now My Dr. is referring me to another neurologist. Its ridiculous that he is dumping me since I didn't get a positive skin biopsy.

NO HE is not dumping you? He just doesn't KNOW!
 

SOO, He's sending you to someone Who MITE! BE glad! Many other docs would just string you along.... get what I'm saying? That is ONE honest doc!
It IS: that your current doc IS concerned, and has no clue what to do for YOU! Ergo, he's sending you to folks HE trusts that MITE have clues and help you. Don't give up yet. Good person! You mite have found your saviour? I am crossing my fingers that it is so.
Having gone thru what you have? Docs and more docs? Tests? and MORE TESTS? and then? What have you got? Maybe something, Ideally something, or the generic inconclusive [get COPIES!!!!!] and learn.
I truly hope that you can and do get 'lucky' with a clear & Simple diagnosis? I truly also hope that you don't get one of the 'uncurables-merely treatables' such as I have in terms of diagnosis.
Keep faith in YOURSELF, and what you say you have/feel, and how it changes. BE consistent and HOPE from me for the best treatment you can get! Do not discount yourself, or let any doc try to do so! Rebut any doc that tries to denigrate who you are or how you feel! Emotions? Well, DUH? Who wouldn't be 'emotional' with this pain? Ask them what planet they are from?
Geesh! Makes me want to take and use my cane as a weapon! I don't, but it's really REEALLY good to THINK about it at times!
Hugs :hug::hug:'s - j

I understand.......
 

exactly how you are feeling, Rose. I have a neuro appointment next week to find out results of my skin biopsy. If he still has no dx. for me, I feel so desperate, I think I am going to tell him to make one up! I know it sounds crazy, but this having symptoms with no dx, can make one crazy!

It seems the more I have to report to my friends/family that again there is nothing found, the more I feel as though they are discounting my symptoms, it is a lonely place to be. Thank goodness for all of you, it is so comforting to be understood.

My extra 300 of Gab. (now taking 1200mg/day), seems to have "kicked" in (took a month). Wiped out about 50% of sensations, but can't help wondering for how long, my orginal dosage was 900, for a year and a half, will I expect I will have to keep adding 300 in another year and a half!?

I am 9 out of 10 times refered to someone else at a doctors apt. I have had a doctor tell my I am a nightmare patient with so much going on,so much testing,and still not a why behind it. I do agree with Dahlek that if a doctor is not wanting to take me on or is not as educated in what I am dealing with I would rather be passed on. I have wasted a lot of time with doctors who just take guesses and made worse in some cases. I am glad you are going to get your records. For every test I have and that even means bloodwork I get a copy. I have a binder full now that I bring to each apt. Along with all meds I have tried,treatments,etc and what has helped,not,side effects.