[Jason]

Hello, I am new here and appreciate this forum. I am looking for some help.

Today I saw a neurologist specializing in polyneuropathy. My symptoms are burning feet and ulnar neuropathy in my left arm(numb 4th and 5th fingers) about three months old.

I brought several tests. The abnormalities in the tests were in the 3 hour glucose tolerance test where insulin was 5x above normal range and glucose was slightly above normal range. In the 24 hour urine analysis protein was slightly above normal range. The EMG test showed ulnar neuropathy. Tests that showed up negative are thyroid, B12, HIV, Lyme disease and heavy metals.

The neurologist told me to talk and he would listen. I explained the onset of my symptoms including that I was withdrawing from risperdal during onset of neuropathy symptoms. I was put on risperdal as a youth to cover zoloft side effects which I was put on against my will as I didn't need to be on it for one because I was not in the least bit depressed. But I felt like I had just told the doctor that I am crazy and was conscious of that.

Then I told him that from reading the internet I thought the burning feet was from an immune disorder(CIDP) or something you want to take seriously. He then said something about the internet, that it has poor information, or that you can read something on the internet and think you have it but you don't. So I said that I googled burning feet a few weeks after its onset to insure him that I didn't read about it then make it up. He said "that'll do it," about google.

Then he asked me if I'm a doctor or if I have read books on polyneuropathy, for briefly meantioning the internet. He said this kindly to insure me that I did not have polyneuropathy, or something serious. But he did not then explain what I could possibly have other than polyneuropathy, or how if I had polyneuropathy how it wasn't something serious.

Here is the thing. He said that he found no signs of polyneuropathy. But during the exam his metal tool felt cooler above my knee than below. He took my word on that in his evaluation. But he didn't take my word on my burning feet?

After the exam he recorded a message for my doctor through a hand held device saying I had no signs of polyneuropathy, but saying about the temperature findings in the "stocking and glove" distribution of my "feet but not hands." Then he told me he thinks the burning in my feet will go away. If it doesn't I should come back in a year or sooner if it gets worse.

So that is my visit to a neurologist.

[Megan]

Oh dear Jasonius, I'm going through all this at the moment also, so I DO empathise!

I believe that most of us go to the internet to look up the symptoms that we ALREADY have. We don't (I don't anyway) go to the internet to fabricate symptoms - I just go there to try and find information/research to see if my symptoms have been experienced by anyone else before me (hehe) and then depending on severity, see if they require follow-up!!

I can't be of much help to you at this stage other than to say, I'm sure that your symptoms are legitimate......so hang in there. Believe in yourself. There are a lot of causes for neuropathies of which doctors often only skim the surface for testing.

Regarding your raised insulin level x 5 times - what did the doctor say about that? Could it be insulin resistance?

There are some good articles posted in the 'stickies' at the top of each forum and hopefully some others will post some links for you..

[Brian]

Hi Jasonius and welcome to the forum,
Your sugar levels above normal range could indicate Prediabete's, which a lot of doctors ignore but it can cause the same symptoms as a full blown diabetic, burning feet is one of the symptoms and should NOT be ignored.
Excessive insulin levels can be very dangerous and that should be evaluated properly, it can lead to real problems like Diabetes amongst others and seeing you felt a differance in temp feeling with his neuro test, i am surprised that he never ordered Quanitive Sensory testing, your burning feet is a typical sign of peripheral small fibre damage to the extremities.
this explains QS testing - http://millercenter.uchicago.edu/lea...nt/index.shtml
I would have a good talk to my GP about those Insulin levels and definatley find another neuro that is a real expert in PN.
good luck,
Brian

[glenntaj]

--and he certainly has first hand experience in this realm.

There is increasing evidence that high insulin levels, especially as revealed during glucose challenge, may well be the first step on the path to diabetes, but that one can get neuropathic symptoms--especially small-fiber sensory ones--well before a frank diagnosis of diabetes can be made, when one is in the realm of "impaired glucose tolerance". And subtle abnormalities of glucose/insulin relationship may not be observable except through such extended glucose tolerance testing (in other words, your "fasting" glucsoe levels and hemoglobin A1c readings may be nicely in range, and you can still have a problem).

High insulin levels (that are not caused by insulinoma, which is very rare) are usually due to insulin resistance--the body's cells have become inured to its actions, meaning much more must be produced to get glucose into cells past resisting cell walls so as to keep blood glucose within tolerable levels. Without dietary and/or exercise intervention, resistance often will increase until the glucose levels can no longer be kept within non-diabetic ranges.

Here are some papers that talk about pre-diabetic neuropathy (so you can show the nuero):


http://www.massgeneral.org/neurology...dOaklander.pdf

http://appneurology.com/showArticle....leId=188500771

http://care.diabetesjournals.org/cgi...full/24/8/1448

http://www.neurology.org/cgi/content/abstract/57/9/1701

http://www.medpagetoday.com/Neurolog...rology/tb/3538

[Jason]

Originally Posted by glenntaj

--and he certainly has first hand experience in this realm.

There is increasing evidence that high insulin levels, especially as revealed during glucose challenge, may well be the first step on the path to diabetes, but that one can get neuropathic symptoms--especially small-fiber sensory ones--well before a frank diagnosis of diabetes can be made, when one is in the realm of "impaired glucose tolerance". And subtle abnormalities of glucose/insulin relationship may not be observable except through such extended glucose tolerance testing (in other words, your "fasting" glucsoe levels and hemoglobin A1c readings may be nicely in range, and you can still have a problem).

High insulin levels (that are not caused by insulinoma, which is very rare) are usually due to insulin resistance--the body's cells have become inured to its actions, meaning much more must be produced to get glucose into cells past resisting cell walls so as to keep blood glucose within tolerable levels. Without dietary and/or exercise intervention, resistance often will increase until the glucose levels can no longer be kept within non-diabetic ranges.

Here are some papers that talk about pre-diabetic neuropathy (so you can show the nuero):


http://www.massgeneral.org/neurology...dOaklander.pdf

http://appneurology.com/showArticle....leId=188500771

http://care.diabetesjournals.org/cgi...full/24/8/1448

http://www.neurology.org/cgi/content/abstract/57/9/1701

http://www.medpagetoday.com/Neurolog...rology/tb/3538

Brian,

Thanks for the help. The first three and last links there don't work. They have the three dots breaking them up.

I know pre-diabetes is linked to PN. That is why I asked my family doctor for the 3 hour glucose tolerance test. He said no but I insisted to have it. It did come back positive and then he diagnosed me as pre-diabetes.

Also I asked him about the abnormal ratio of the albumin and globulin in the blood test which tests for kidney malfunction. He ordered a urine analysis and then a 24 hour urine analysis. They came back high and he wrote me a prescription for a Nephrologist.

So for pre-diabetes I've been avoiding sugar and bread and having mostly fish and vegetables and exercising. I am normal body weight. I wonder what else would cause high insulin levels though besides insulin resistance. Also why do people with pre-diabetes get PN when people with long standing diabetes don't get it? Obviously I have high insulin production and also the beginning of PN.

[Jason]

Originally Posted by Brian

Hi Jasonius and welcome to the forum,
Your sugar levels above normal range could indicate Prediabete's, which a lot of doctors ignore but it can cause the same symptoms as a full blown diabetic, burning feet is one of the symptoms and should NOT be ignored.
Excessive insulin levels can be very dangerous and that should be evaluated properly, it can lead to real problems like Diabetes amongst others and seeing you felt a differance in temp feeling with his neuro test, i am surprised that he never ordered Quanitive Sensory testing, your burning feet is a typical sign of peripheral small fibre damage to the extremities.
this explains QS testing - http://millercenter.uchicago.edu/lea...nt/index.shtml
I would have a good talk to my GP about those Insulin levels and definatley find another neuro that is a real expert in PN.
good luck,
Brian

Brian, thanks for the info. That site says that QST uses temperature to test the small fibers and vibration to test the large fibers. He didn't use QST but he used hand held tools to test temperature and vibration and asked me for feedback. My legs were positive on the temperature and not the vibrations.

I don't understand how his test was positive for small fiber peripheral neuropathy, which is what I have, but yet he reported back to my doctor that he found no signs of it.

Help me with this. I have had an impossible time getting doctors to help me with PN the last couple months. Is there a medical record that doctors can access for information on patients. Mine would say "hypochondriac" for sure. I don't think there is such a record or anyway for doctors to get that information. Does anyone know if there is something like this? If there is I am SOOL.

By the way here is the neurologists website: http://www.med.upenn.edu/apps/facult...hp/g324/p11842

"Description of Clinical Expertise:
The diagnosis and management of peripheral neuropathies."

[Brian]

Originally Posted by Jason

Brian, thanks for the info. That site says that QST uses temperature to test the small fibers and vibration to test the large fibers. He didn't use QST but he used hand held tools to test temperature and vibration and asked me for feedback. My legs were positive on the temperature and not the vibrations.

I don't understand how his test was positive for small fiber peripheral neuropathy, which is what I have, but yet he reported back to my doctor that he found no signs of it.

Help me with this. I have had an impossible time getting doctors to help me with PN the last couple months. Is there a medical record that doctors can access for information on patients. Mine would say "hypochondriac" for sure. I don't think there is such a record or anyway for doctors to get that information. Does anyone know if there is something like this? If there is I am SOOL.

By the way here is the neurologists website: http://www.med.upenn.edu/apps/facult...hp/g324/p11842

"Description of Clinical Expertise:
The diagnosis and management of peripheral neuropathies."

I also had a hell of a time convincing doctors that i had real problems, i went to 6 GP's none of them had a clue, one rheumie, that couldn't find anything wrong and one Professor of Neurology, who done a Nerve Conduction test and said, " i showed no signs of PN,[ nerve conduction only tests for large nerve damage] another idiot that actually said to me " i don't think you have burning feet, the test [NC test] proves that , it was the Internet that helped me find out what was wrong, in particular the PN forum i stumbled across in my desperate search for answers, the experts here pointed me in the right direction, thank god, so i insisted that my local GP send me to a PN expert which i eventually got to see [ after a battle with him ]and he diagnosed "Prediabetes" as the cause after a 3 hour Glucose tolerance test,
& i was running real low on B12 as well.
The reason why your feet are burning is that the small nerve's are damaged and are sending confused signals, your small nerve job is to sense heat, cold & pain, a clear indiction was when you felt that neuro's tool feel differant above your knee, he should have picked that up and sent you for a QS test.
I have to get going , pretty busy day today, but others will explain more.
Brian

[glenntaj]

--sorry about several of those links not working with the ellipses; I copied them from another post on this board in which they did seem to be working.

Let's try again:

http://intl.neurology.org/cgi/content/abstract/60/1/108

http://www.ncbi.nlm.nih.gov/sites/en..._uids=16448668

http://www3.interscience.wiley.com/c...TRY=1&SRETRY=0

http://www.ncbi.nlm.nih.gov/sites/en...d_AbstractPlus

Couldn't get the original link for the fifth one, for reason, but these four should provide a basis if you ever need one.

Here's another link:

http://www.ncbi.nlm.nih.gov/sites/en...RVAbstractPlus

And I think Brian Paul's post is a very cogent explanation of why so many of us have had to go through the diagnosis merry-go-round that Dahlek talks about.

Still, an informed patient who is willing to challenge a doctor for not looking beyond the borders of the box is still in a better position, even if the doctor's hackles get raised, than an uniformed patient who just unquestioningly follows every physician pronouncement. It is absolutely vital that one always gets one's test results, that one examines them closely, and that one not feel intimidated in suggesting certain other tests to a physician or in contributing to the running of a protocol. Good doctors do not mind an informed patient--most rather appreciate it. Those that object and take the "I'm the expert--just do what I say" route are generally not only forgetting that we are the ones who live in our own bodies, and so are, in the end, the final experts on them, but are engaging in an egoistic and obvious self-justification.

[Jason]

Originally Posted by Brian

I also had a hell of a time convincing doctors that i had real problems, i went to 6 GP's none of them had a clue, one rheumie, that couldn't find anything wrong and one Professor of Neurology, who done a Nerve Conduction test and said, " i showed no signs of PN,[ nerve conduction only tests for large nerve damage] another idiot that actually said to me " i don't think you have burning feet, the test [NC test] proves that , it was the Internet that helped me find out what was wrong, in particular the PN forum i stumbled across in my desperate search for answers, the experts here pointed me in the right direction, thank god, so i insisted that my local GP send me to a PN expert which i eventually got to see [ after a battle with him ]and he diagnosed "Prediabetes" as the cause after a 3 hour Glucose tolerance test,
& i was running real low on B12 as well.
The reason why your feet are burning is that the small nerve's are damaged and are sending confused signals, your small nerve job is to sense heat, cold & pain, a clear indiction was when you felt that neuro's tool feel differant above your knee, he should have picked that up and sent you for a QS test.

Thanks again Brian and everyone.

Brian, I brought my GTT test, blood, and urine tests to the neuro. He said the tests didn't show anything related to the neuropathies. My family doctor said a few weeks ago that the GTT test shows that I likely have Pre-diabetes and that might have to do with the neuropathies. I had to ask my family doctor a couple times before he got me the GTT test. He didn't seem to know Pre-diabetes doesn't have to show up in a regular blood test. Since I was on Risperdal so long I wanted that test for Pre-diabetes. I'm glad that your PN expert diagnosed Pre-diabetes as your cause based on your GTT test. Was that all he needed to make the diagnosis?

I have to get going , pretty busy day today, but others will explain more.
Brian

Hope you got to relax a bit. Take care.

[MelodyL]

Ugh, maybe I'm clueless (or maybe your neuro is), but didn't you mention something about a positive glucose tolerance test??

Maybe your are pre-diabetic?? Are either of your parents a diabetic??

Lots of questions will follow, believe me. But for this guy to say "don't believe everything you read on the internet is just plain stupid".

Many people on these forums know a great deal about neuropathy. More than their own doctors do. Unfortunately, with so many people being diagnosed, many doctors just throw up their hands and hand you a pain killer.

So keep watching for responses to your post.

People here will help you.

Melody

OH, I SEE YOU POSTED TWICE AND OTHERS HAVE JUMPED ON BOARD AND SAID WHAT I SAID. See?? people will help you.