Hi all
I have been doing the peripheral neuropathy bit for 18 months of more.
EVERY test that I've had (many, many on LizJane) have been negative
including the last bunch ordered by a peripheral neuropathy specialist.
I also had the skin biopsy a couple of weeks ago and eagerly (can you believe I want a positive SOMETHING) awaiting it's results. To name but
a few and probably forgot many, the usual CBC, lytes, B12 (then the specialized B12...methy...something), sjogrens, celiac disease, GTT.
homocystine, all thyroids, heavy metal, ncv, emg, anti hu, immunglobulins
A, M and G. Apparently mine is small fiber as dont currently have any motor/autonomic involvment. I am 64, female, and have the burning in feet, legs, hands and arms. Is it possible to have idiopathic and still have a negative skin biopsy? I am so hoping for this to be positive. Nobody seems to understand, I look fine and all tests negative. I am starting to wonder if I am nuts (or for sure other people must think it is psychological and yet I
really dont think I am) Also had brain MRI (normal) Mri cervical spine which shows some bulging discs, stenosis, etc. but not enough for surgery or for the symptoms I have having below the waist. Any other thoughts? ps
have tried by omission many meds, supplements, laundry detergents, and add many of the suggested supplements without any changes. Sorry for the rambling I did so hope something would show even if it wasnt good. THEN I could maybe deal with the problem better. Yeah, part of the bigger picture is I feel no one seems to understand. Again, I know I am repeating myself but when you have a broken leg people see, when you have some other horrible things labs show...Guess I shouldnt give up hope for a positive skin
biopsy yet. Dont see how it could be negative with all the burning BUT...I
know it may not change the treatment or lack there of but at least there would be some credence.

I too have beenthrough all the things you mentioned. I have had PN for ten years. If you have pain find a medication to lessen it. Then go to the stickes up top and find the vitamins recommend by MRS. D. I have lowered my pain level from 15 to 2 in 8 years. We have learned to try different things and if they don't work keep trying. We have also learned never stop researching and be your own Doctor. I intend to cure myself or die trying. Either way I win.

George

Hi SBVCRN,

I really empathise with you wanting a positive result for SOMETHING. Anything at all...... just as long as it points the doctors in the right direction and they can then 'believe' your symptoms!! That's how I feel anyway!

I do hope you get some answers with the skin biopsy....and I too would like to know whether these skin biopsies are conclusive in their findings - even in the early stages of PN.

In Australia the skin biopsies have not yet been given the go ahead (unless it has happened very recently), so I haven't had one done, but would like too. The task force who produced the 'skin biopsy for PN' report here in Australia, developed some long convoluted argument as to why they are not useful (cost effective more like it). It mainly came down to the fact that there is no treatment anyway for most of the idiopathic PN's, so what use is a definitive diagnosis? HOWEVER I think, for the patients it is important to have confirmation, not the least being that doctors don't think it is all in your mind!

I can't believe my doctor (GP) who diagnosed my PN still hasn't written it in my history notes as a current issue for me. Probably because the Neurologists I saw couldn't find any substantiation of PN with all the negative test results. So this is one area where I think, to have a definitive diagnosis would be beneficial even if there is no treatment.

Fingers crossed for you!

I looked up the paper and it is evident that they don't consider having a clear diagnosis to be a benefit to the patient. That is a obvious nonsense, as can be easily appreciated when you turn it round and ask the question: What is the effect on a patient of having a painful condition and not being given a diagnosis?

The answers are in the posts above, and I have also experienced them. In my early stages and again as my condition progressed, the attitude of Doctors led me to suppose they thought me a fraud, and that attitude eventually allowed my own condition to deteriorate to the point of an emergency operation for spinal decompression. (I don't have peripheral neuropathy, it is my spinal cord which is damaged and gives me neuropathic pain, but hey I'm splitting hairs, the principle is the same: Non diagnosis is harmful.)

--for detecting small-fiber damage.

It was the only "positive" or "abnormal" test (nearly two hundred results' pages worth) I ever had--and I had an acute onset, full-body, burning/stinging neuropathy with very high pain levels.

However, owing to the protocols by which "damage" is determined--basically that one be either below the fifth percentile or above the ninety-fifth percentile in intraepidermal nerve fiber density (as determined from a group of "normals" originally research primarily through Johns Hopkins Medical Center in Baltimore, MD), it may not catch all people who have a developing small-fiber neuropathy, or who have damage from their own normal density but not sufficient to place them above or below those percentiles. To be sure, good pathologists will also look at the condition of the nerves, particularly if there is swelling or excessive branching of fibers, as these are indicative of some dysfunctional process.

There are more and more cases, though, of people with neuropathic symptoms for which this is the only abnormal test, and they are still considered idiopathic. (Many people with diabetic, pre-diabetic, or vasculitic/autoimmune neuropathy will also show small-fiber damage on skin biopsy.)

This link is a very good summary of the utility skin biopsy in determining neuropathy, with a great reference list for further reading (you may have to set up an account and log in, but it's free):

http://www.medscape.com/viewarticle/563262_1

BTW, as regards spinal conditions, don't assume that cervical problems cannot lead to symptoms below the waist. Depending on the situation and the anatomy involved, spinal problems can lead to symptoms at any anatomical level at or below the level they occur at--and it's why those with neuropathic symptoms are often very hard to interpret and narrow down the cause of, as symptoms of a peripheral neuropathy and/or a spinal/nerve root problem may be exactly the same.

there is something in your environment that you are reacting to.

I for one, seem to react to the nightshade family of vegetables.
When I have potatoes, for dinner, my feet burn ALOT.

By avoiding them as much as possible, I can see their effects when I do try them again.

I also have problems with fructose (just discovered this).

If you take an ACE inhibitor for blood pressure, that increases bradykinin and may cause burning.

You may have inherited a mito disorder (recessive for you) and you may respond to mito support supplements like CoQ-10 and acetyl-carnitine.

Were you tested for CMT? Vitamin C is now being tried for these patients.

All over burning is often reported with illness. I had a virus a couple of years ago, that was not severe, but I had terrible burning! This is because of inflammation.
You could try anti-inflammatory herbs like curcurmin and ginger to see if you have an inflammatory problem. A hint would be if you respond to NSAIDs at all. If they reduce discomfort for you,
then I'd try an anti-inflammatory approach.
If you have had an Epstein-Barr infection like mono in the past, I'd try some high dose l-lysine for a month. This would be in the 2gram range minimum.

If you want, you can PM me your current drug list, and I'll look up any depletions that may be happening to you because of what you take.

Thank you all for the remarks. I realize that even if the skin biopsy is positive we may not know the cause, I just need some confirmation. It is difficult, as you all know, to not be taken seriously when you look fine.
Mrs. "D" thanks for the remarks. I currently take an ARB (angiotensin receptor blocker) for BP and have for years. The neuropathy is about 18 months. I eat a balanced diet, BMI 24.6, exercise. The supplements I am now taking after reading the "stickies" are R lipoic acid, benfatomine, B12 (the methy one) evening primrose oil, Calcium citrate, magnesium, senior multivitamin, l arginine, vitamin D3 CQ 10. My Rx meds are the ARB (avapro), neurontin 300 mg 3X day (doesnt do anything) and will probably stop it,
menostar patch. Ibuprofen nor acetaminophen does nothing for the burning. Vicodin 1/2 pill takes the edge off but only really use it at night. Occasionally take Ambien for sleep if things are really bad. So far a hot bath seems to help the most. Doesnt make sense that hot would work but cold makes it worse. In addition to the "usual" tests (all normal) the peripheral neuropathy neurologist ordered the immunofixation...normal, immunoglobulin G 682 (low...normal 700-1600), immunoglobulin A 181 (norm 70-400), immunoglobulin M 45 (norm 40-230_, sjogren's anti SSA 27 (norm 0-99),
sjogren's anti SSB 1 (negative less than 100), Deamidated gliadin Abs, Iga 1.6
(norm 0-10), deamidated gliadin abs, IgG 0.7 (norm 0-10), B12 (previously done was 685) now the methylmalonic acid 234 (norm 73-376), homocystine 6.5 (norm 5-12), previously ANA less than 1;40, Crp 0.8, etc. Some days are better than others and I rack my brain to see what I ate, did, etc. and cant seem to find any correlation. Dont use diet soda's, etc., caffeine once a day if that much, dont particularly crave sweets so eat few, so right now I am not sure where to turn. Notice you mention Acetyl carnitine so will add that also. Any other thoughts from anybody? All appreciated.

I have a question...What is the l-arginine for?

The reason I ask is that it stimulates viral replication.
L-lysine balances it.

Some people believe that too much l-arginine will stimulate latent viruses.

I'd cut back on that and see if there is any change at all.

Here is a food chart for foods high in arginine, you might want to avoid for a while...see if anything there you crave and eat too much of, etc.
http://www.herpes.com/Nutrition.shtml
I think the Lysine is a potential thing to try. It is pretty benign and shouldn't have any negative effects of any kind.


So far I have not found much on long term use of Avapro.

Were you tested for Lyme disease? Neuro effects from that can be very puzzling.

Hi mrs. D
Read about the l-arginine somewhere. Will stop it as havnt seen any results from anything so far and it has been a while. Am ordering from Iherb and will order the lysine and give it a try. Forgot but also take omega 3's. Never been tested for Lyme. Will ask next time I go. Dont think we are in any kind of lyme area, dont ever recall any ticks, and read it is hard to really get an
accurate reading. Guess we'll just have to see what happens. So far ONLY burning...no numbness, weakness, autonomic problems so guess I am blessed.

Your Avapro, belongs to a family of receptor blockers for angiotensin. I looked them up today in detail. I get no hits on "neuropathy"... BUT..

I do get reports up to 4% that they can cause rhabdomyolysis.
This is a breakdown in muscle fibers--
It occurs in mito disorders/damage
AND with the use of statins for cholesterol.

Rhabo can be mild or severe. But it always raises CPK levels
which can be measured.

It could be you are having mild mito damage from the drug.
Since this is not common...no anectdotal reports from PubMed
that I could find. However, the subject of rhabdo is huge.

Whenever a person has been on a drug for a while, and then something else comes up, doctors often do not look closely at the drug being used. It is sort of a tunnel vision.

from patientsville.com FDA reports:
http://patientsville.com/medication/...de_effects.htm

from RXlist.com: http://www.rxlist.com/avapro-drug.htm
So I think consideration of Avapro, may be warranted, since you cannot find any other reason.
I also think a viral trigger may be a culprit, and viral assaults are hard to find and prove.