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Jason 10-06-2007 12:17 AM

Visit to a Neurologist
 
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 10-06-2007 01:22 AM

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 10-06-2007 03:18 AM

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 10-06-2007 07:06 AM

I underline everything that Brian says--
 
--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

MelodyL 10-06-2007 08:15 AM

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.

Jason 10-06-2007 08:17 AM

Quote:

Originally Posted by glenntaj (Post 155305)
--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 10-06-2007 08:24 AM

Quote:

Originally Posted by MelodyL (Post 155312)
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.

Hi Melody,

Thanks. Sorry for the double post. I Know it that many people on these forums know more about neuropathy than their doctors. I will respond in the other thread.

Curious 10-06-2007 08:55 AM

good morning. i merged the two threads. :)

welcome janonius. :Wave-Hello:

Jason 10-06-2007 09:08 AM

Quote:

Originally Posted by Brian (Post 155280)
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."

Jason 10-06-2007 09:10 AM

Woops, glenntaj I meant to respond to you in post #6. Thanks for your help.

Brian Paul 10-06-2007 01:14 PM

Why Me? or You Are Not Alone
 
Hi Jason and other responders,
By all means, do not let doctors minimize blood sugar levels. Not to alarm you, but I am now in a fine pickle because I followed a doctor's uninformed dictates and pooh poohs. I now have serious problems as a result of ignoring my problems since I wanted to believe that the doctors know best.

This is just not true. Doctors more and more have their specialized interests/focuses and don't keep up with the general growth and change in all things medical. The number one issue is attention to medications. The number two issue is lack of attention and willingness to investigate beyond their comfort zone. My doctor was very well-versed in many areas and yet knew nothing about diabetes. My three month average tests were normal, yet my blood sugar was ping ponging and would (like yours) be high and very low. Since the numbers indicated no diabetes, I was actually scorned for being paranoid and concerned about my condition, and told not to waste my time going to a diabetic specialist.

Huge mistake. All of the things I have been experiencing off and on over the last few years...extreme dryness of skin, exhausted and/or sweating after meals, painful feet, legs, arms and hand areas, have come home to roost.

I don't even have that high of blood sugar levels, and yet have major pain, and neuropathy. I, literally over the period of a few weeks, became very ill, and now know that it was all about my blood sugar. I am on medication currently, but suffering constantly with pain due to the neuropathy.

Mine is a story of neglect, and consequences which I hope can help others follow through with their own personal care, based on what they know is going on with their bodies, and not be dissuaded by a doctor or group of doctors, who, in all likelihood, are speaking out of ignorance and inexperience.

In closing, I think of many years ago when I was lucky enough to be sent to Mayo Clinic due to what I thought was a hasty doctor's diagnosis. How it works there is...you have one doctor who sends you all around the clinic for tests based on your symptoms. No stone was (and hopefully they still operate like this) left unturned in the testing. The tests were not based on what they thought you might have, but on all of your systems. Then the one doctor reads all of the reports and presents a well-informed diagnosis to you. In my case, it has saved my life on two occasions (not exaggerating).

I still want to trust doctors, because you can't handle your medical care without them. Finding the right one is no different than finding a mechanic you can trust.

Alkymst 10-06-2007 01:43 PM

Good advice
 
Jason,
You've come to the right place for frank discussions of SFPN, prediabetes, polyneuropathies, etc. There is a wealth of info on this site and as people have noted much of it is not generally known and or recognized. I looked up your doc @ UPenn, I'm not familair w/ him but I also go to UPenn and my experience has been much different and more positive. If you seek a second opinion I'd push hard for Dr. Mark Brown, the dept chair - his specialties are diabetic and prediabetic SFPN.
If you want pm me and we can discuss in more detail offline. I'm sorry for your plight PN sucks at best but it's nice to have someone in the same general area to talk with.
Best of luck to you.
Alkymst

Dakota 10-06-2007 02:05 PM

I think that the only thing to do when a doctor treats you like that is to ditch him and try another. It is very stressful (for me) to try a new doctor out, but that is really the best option. I never go back to a doctor that I am not satisfied with.

dahlek 10-06-2007 02:08 PM

Jason, heed all who have posted above me....
 
and have faith that we ALL have been through the FOOD PROCESSOR called 'diagnosis'.
Two things I cannot underscore here are that: 1- NEVER EVER SAY: I learned on the Internet! Say that about 17 thousand times...rather said...I read at the NINDS website about X & Y tests being the norm...etc. Or from Hopkins or Cleveland Clinic or MAYO! That will make your docs know/KNOW you are reading from credible sources about SPECIFICS! and 2- SECOND OPINIONS! They are worth their weight in GOLD...I totally dumpted neuro #1 for #2- attitude and communication are essential for dealing with this STUFF and #1 did NOT have any tact AT ALL...nor empathy, nor [after I found the folks here] any real knowledge of this portion of the neuro world. I got a 2nd - 2nd opinion of #2 neuros' diagnosis which took things a step faster/agressively in the diagnostic quarters and I am grateful -ever so much for that! I've also seen 4 other neuros in relation to my issues and things are pretty much confirmed about ME. IF your insurance allows it, DO it...A second [or more] opinion office visit is CHEAP compared to the damage that could happen from improper/prompt diagnosis/treatments.

Read the 'Stickies' at the top of the page, click onto the links to other sites/papers/opinions etc. [in blue] and read lots of prior posts here. That way you will get a pretty solid handle that we are not a bunch of 'poor-me' back patters. Each of us has been thru that purgatory called Neuropathy to many different degrees and pain levels... I for one, not only 'feel' for you, but with you! And-that you got such a turkey of a first neuro, well, it really steams me! THAT is a doc that better get into THIS century and quickly! Nuff said? :hug:- and now get to work on getting a good doc and getting what YOU NEED! - j

mrsD 10-06-2007 02:19 PM

Hi Jason...
 
Welcome to our board.

After reading your first post, I have some questions.

Did you have that glucose tolerance test at the same time you were on the Risperdal treatment?

How old are you?

How long were you on Risperdal? Long term use of Risperdal has been shown to cause pituitary tumors and increases in prolactin which is a hormone.

Are you overweight with abdominal fat? Risperdal causes weight gain.

When you had that GTT, you had both insulin and glucose run with each
blood draw?

Do you rest on that elbow alot due to life style habits? Work tasks?

Do you eat whole foods, and tend to be careful to keep healthy food habits?

What you do, what you eat, and what drugs you take or have recently taken, can impact alot on the nervous system.

Brian 10-06-2007 06:47 PM

Quote:

Originally Posted by Jason (Post 155324)
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 :mad:, 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 10-06-2007 08:20 PM

Hey Jason--
 
--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.

Silverlady 10-06-2007 08:40 PM

Living proof
 
Glenn's statement about being willing to challenge a doctor is the beginning of how I was finally diagnosed. The neuro I was using at the time basically had given up on me. Tests were all negative that he ran. But I was in terrible pain with symptoms of small fiber sensory neuropathy. I had been diagnosed with Sjogren's Syndrome previously. Thru the help I received on this board and my own research, I was able to print off a series of applicable documents that showed the relationship of neuropathy to Sjogren's Syndrome. I mailed them to the neuro who had given up along with a cover letter telling him that I had spoken to his nurse and she said she didn't think he'd mind receiving some current literature relating to the problem (which was true).

The neuro called me on a Sunday afternoon. Told me he'd read my research and he was referring me to one of his associates who was a neuromuscular specialist. She ran a few tests of her own and told me she agreed with the research I'd found. But we had no way to prove it. She decided to refer me to Mayo Clinic. I eventually received an appointment with the help of a close physcian friend. Mayo diagnosed me with Small Fiber Sensory Neuropathy caused by Sjogren's Syndrome.

It was thru my being willing to challenge the doctor and educate him that I finally received the diagnosis. I continue to educate my neuro and my rheumatologist about the devastating effects of Sjogren's on the nervous system. They are both willing to learn. I feel thru my efforts to educate them both, I am perhaps helping someone else with this illness.

Billye (didn't mean to write a book) :p

mrsD 10-07-2007 08:35 AM

your drug use...
 
Risperdal may be the culprit. Please answer the questions I posed a bit earlier so I can understand your predicament better. :)

Also I just learned that the new fats included in food, (to effect the trans fat
removal that is currently in effect) called interesterified fats on labels,
can raise blood sugar 20%!

http://www.sciencedaily.com/releases...0116131545.htm

These would be in restaurant foods, cakes/cookies, some processed food, some peanut butters.

Jason 10-07-2007 09:40 AM

Quote:

Originally Posted by Dakota (Post 155405)
I think that the only thing to do when a doctor treats you like that is to ditch him and try another. It is very stressful (for me) to try a new doctor out, but that is really the best option. I never go back to a doctor that I am not satisfied with.

To say I am not satisfied is an understatement. I AM FURIOUS. He basically said that I am lying about my symptoms.

mrsD 10-07-2007 10:09 AM

Jason...
 
If you are relatively young.... doctors do this. They tend to do it for everyone,
but basically they form opinions about you within 10 secs. How you sit, how you present, your face eyes (may show puffiness etc), whether you fidget, all sorts of things.

Right now my son is going gluten free (he has tried it on and off) because he
feels strange, cold and numb when he eats gluten. He went to a GP in Sept and had testing, basic stuff, and all was normal. He was told to keep a food diary with symptoms's occurance for 2 months, and to return. It is difficult to be young and active socially and stay gluten free, so he has slips now and then.
The longer he follows the diet, the more obvious the symptoms when he slips.

I suggest you go to the Gluten forum here and read Megan's question, and also read the responses. She is beginning as well to investigate this.

If your GTT was only elevated one or 2 pts and you weigh alot, are very tall, etc or overweight, that is sometimes considered normal. If you were taking Risperdal when you had the test or just stopped it recently, your blood sugar can be off from that. Risperdal and other drugs of its type cause diabetes in some patients.

There may be ways for you to improve, that do not require a doctor at all.
But you have to tell us here some details about yourself in order for us to
suggest nutritional supports.

daniella 10-07-2007 10:12 AM

Hi. First welcome and sorry for your struggles. I can relate to this. The doc I saw last week here was similar. I have learned and I know its so stressful to start over but in the long run will make things better. I wasted time by giving chances when I knew in my heart they sucked. You need someone to listen and when results of blood or other tests are confusing to look outside th box for just maybes even. Your not making this up and I hear how your frustrated. I often wonder if docs turn it on us when they are frustrated and were not an easy fix. Hang in there.

Jason 10-07-2007 11:13 AM

Quote:

Originally Posted by mrsd (Post 155410)
Welcome to our board.

Hi mrsd. Thank you!

Quote:

After reading your first post, I have some questions.

Did you have that glucose tolerance test at the same time you were on the Risperdal treatment?
I had the test a month after finishing withdrawing from Risperdal. I went down from 4mg to 1mg of Risperdal the last 1.5 years with no withdrawal. At the end of June I went off the 1mg for 4 days and got a little anxious then read about safety issues with going off without tapering then went back on .5mg and tapered off that the next 6 weeks.

Quote:

How old are you?
32

Quote:

How long were you on Risperdal? Long term use of Risperdal has been shown to cause pituitary tumors and increases in prolactin which is a hormone.
12 years. It also factors in diabetes.

Quote:

Are you overweight with abdominal fat? Risperdal causes weight gain.
I am normal weight. 5'11" 175 pounds. In twelve years I got up to 215 pounds a couple times.

Quote:

When you had that GTT, you had both insulin and glucose run with eachblood draw?
Yes to glucose, and insulin just the last three. Here are the results:

At beginning glucose was 90, insulin wasn't shown
First hour glucose was 206, insulin was 108.0
Second hour glucose was 156, insulin was 121.0
Third hour glucose was 82, insulin was 25.2

The test says insulin is normal below 29.2 for each one.

Quote:

Do you rest on that elbow alot due to life style habits? Work tasks?
Prior to the ulnar injury for a few weeks I was wresting on my elbows, which I normally didn't do. I also slept with my elbows bent and was doing maybe improper dumbbell exercises last year. The injury came when I was sleeping with the elbow bent. Now I am not leaning on it and am sleeping with Velcro splints loosely on both arms to remind myself not to bend them.

Quote:

Do you eat whole foods, and tend to be careful to keep healthy food habits?
I am careful about that. I'm eating mostly fish, vegetables, goats milk yogurt, a little amount of fruit, and a lot of water. A couple months ago I was eating/drinking less healthy including a large Pepsi a day and a lot of fruit, bananas, skim milk, whole grain cereal, and salted almonds. Before that I ate processed food and whole food and a couple time periods having sugar drinks. Before that it was mostly processed food.

Quote:

What you do, what you eat, and what drugs you take or have recently taken, can impact alot on the nervous system.
Thanks mrsd, I appreciate the help.

mrsD 10-07-2007 12:08 PM

Ok,
 
Only burning feet, no numbness, no cold sensations?

Your fasting glucose was fairly normal. The response to the glucose solution
was high. This is called post-prandial elevation, and occurs in many so called normal people. You can control this with diet, by avoiding high glycemic carbs, and eating wisely like you are doing.

I haven't seen many studies to show how after discontinuing Risperdal/Zyprexa if the diabetes risk goes away...whether it is permanent or not.

Another thing you can do is take thiamine 200mg/day in divided doses. Thiamine helps metabolize carbohydrate and also helps reduce burning pain. This may work for you.

Do you know your B12 actual test number? If it is below 550...I think you should do the B12 we all use here... 1mg methylcobalamin by Jarrow. We get it on line at www.iherb.com or other discount vit places like Vitacost.

Fish oil also helps with neuropathy and helps keep the nerve myelin sheaths, intact and healthy. Not all fish are equal in fatty acid content.

These are beginning ideas that may increase your health, and may reduce some burning. If you were elevated glucose for many years and did not know it, it could have led to your being more prone to diabetic neuropathy.

If I were you I'd start here. If you are on other drugs now, you can PM me with those, because some drugs do deplete nutrients and have a negative impact on health. I'll look them up for you.

Jason 10-07-2007 12:37 PM

Quote:

Originally Posted by Brian (Post 155491)
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 :mad:, 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?
Quote:

I have to get going , pretty busy day today, but others will explain more.
Brian :)
Hope you got to relax a bit. Take care.

Dakota 10-07-2007 01:16 PM

Don't blame you a bit. I am furious for you!

Jason 10-07-2007 02:31 PM

Quote:

Originally Posted by mrsd (Post 155654)
Only burning feet, no numbness, no cold sensations?

Only mildly burning feet. Right big toe is mildly numb sometimes. Fourth and fifth left digits are mildly numb always. No cold sensation. A little burning in mouse using fingers sometimes. One other thing burns a little sometimes.

Quote:

Your fasting glucose was fairly normal. The response to the glucose solution
was high. This is called post-prandial elevation, and occurs in many so called normal people. You can control this with diet, by avoiding high glycemic carbs, and eating wisely like you are doing.

I haven't seen many studies to show how after discontinuing Risperdal/Zyprexa if the diabetes risk goes away...whether it is permanent or not.
OK, thanks.

Quote:

Another thing you can do is take thiamine 200mg/day in divided doses. Thiamine helps metabolize carbohydrate and also helps reduce burning pain. This may work for you.
OK, I will.

Quote:

Do you know your B12 actual test number? If it is below 550...I think you should do the B12 we all use here... 1mg methylcobalamin by Jarrow. We get it on line at www.iherb.com or other discount vit places like Vitacost.
Thanks, it is 432. I will take it.

Quote:

Fish oil also helps with neuropathy and helps keep the nerve myelin sheaths, intact and healthy. Not all fish are equal in fatty acid content.
Good idea. LOL

Quote:

These are beginning ideas that may increase your health, and may reduce some burning. If you were elevated glucose for many years and did not know it, it could have led to your being more prone to diabetic neuropathy.

If I were you I'd start here. If you are on other drugs now, you can PM me with those, because some drugs do deplete nutrients and have a negative impact on health. I'll look them up for you.
I'm not on any other drugs other than supplements.

LizaJane 10-07-2007 08:23 PM

Wow
 
Brian wrote you a great post on diabetes, and gives good advice. My take is that you need someone excellent to handle the diabetes (prediabetes is a silly concept) and get that under control. The ulnar neuropathy needs to be explained. Where is it from? The wrist? The elbow? It is NOT typical of small fiber neuropathy to get a neuropathy of a single LARGE nerve like this. That's more typical of compression. It's not even something that looks like it's from a spinal disk. So I'd want to know why the ulnar neuropathy.

In terms of the burning feet...You probably have your cause right in front of you, in terms of the diabetes, but if you want a better workup, it looks like you need another neurologist.

Many doctors are threatened by patients on the internet; others just don't realize that an intelligent person can distill out the good information from the worthless. If he hasn't looked at the net from a patient's perspective, he doesn't know. He doesn't sound like someone to have an ongoing relationship. Depending on where you live, you might a very good general neurologist (many of them are excellent), or another neuro who calls himself a neuropathy specialist. Or, I might be safe to just get the diabetes under control---as long as you have someone good and caring taking care of you---you can always go for more tests if it goes in the wrong direction after taking care of the sugars/insulin.

But I'm not sure that whatever explains the feet explains the ulnar symptoms.

It's possible to have termites AND ants, my own neurologist told me.

Jason 10-07-2007 09:49 PM

Quote:

Originally Posted by LizaJane (Post 155739)
Brian wrote you a great post on diabetes, and gives good advice. My take is that you need someone excellent to handle the diabetes (prediabetes is a silly concept) and get that under control. The ulnar neuropathy needs to be explained. Where is it from? The wrist? The elbow? It is NOT typical of small fiber neuropathy to get a neuropathy of a single LARGE nerve like this. That's more typical of compression. It's not even something that looks like it's from a spinal disk. So I'd want to know why the ulnar neuropathy.

In terms of the burning feet...You probably have your cause right in front of you, in terms of the diabetes, but if you want a better workup, it looks like you need another neurologist.

Many doctors are threatened by patients on the internet; others just don't realize that an intelligent person can distill out the good information from the worthless. If he hasn't looked at the net from a patient's perspective, he doesn't know. He doesn't sound like someone to have an ongoing relationship. Depending on where you live, you might a very good general neurologist (many of them are excellent), or another neuro who calls himself a neuropathy specialist. Or, I might be safe to just get the diabetes under control---as long as you have someone good and caring taking care of you---you can always go for more tests if it goes in the wrong direction after taking care of the sugars/insulin.

But I'm not sure that whatever explains the feet explains the ulnar symptoms.

It's possible to have termites AND ants, my own neurologist told me.

LizaJane, I read that cubital tunnel compression is common to people with diabetes. I didn't think they were related for a while until I read that. The orthopedic surgeon said the EMGs show the problem mostly at the elbow and lesser somewhere above it which is double crush. My posture in the shoulder area is less than ideal. I am fixing my posture with exercises and ergonomics. I don't know yet what causes neuropathies in people with pre-diabetes and diabetes. If pre-diabetes is my cause for sure it wouldn't be sugar level because mine are close to normal after drinking that sugar drink they give you for the test.

Megan 10-08-2007 12:42 AM

An interesting link...
 
......outcomes of which I'm sure we are all aware of, but often do not necessarily take seriously - soft drink consumption!

http://www.medscape.com/viewarticle/560344

Jason your question: ‘Also why do people with pre-diabetes get PN when people with long standing diabetes don't get it’, has me totally puzzled too. It just doesn’t make a lot of sense. I wonder if there are other as yet undiscovered comorbid conditions related to this! I went to a diabetologist/endocrinologist a couple of weeks ago and he totally denied that there was a connection BUT that is NOT what the published literature that I have been reading, is saying.

Also from Jason’s post: ‘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’. That is the same with the neurologist I went to. Only used some ‘tools’ on hand – nothing computerised to test sensations and proprioception. Do neurologists usually have this equipment in their rooms or do you have to get QST done as a separate test in a specialised lab?

Brian 10-08-2007 03:20 AM

Quote:

Originally Posted by Jason (Post 155660)
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?

Hope you got to relax a bit. Take care.

Thanks mate, i am glad that you were on to the side affects of that drug and you pushed for the GTT, with those results it's real important to keep that weight off, no high sugary carbs, eat sensibly which you are and as Mrs D said, eat lots of Low GI foods especially,the benefits are that the blood glucose level rises and falls gradually, providing a slow release of energy from carbohydrate into the body.
My neuro sent me off with a long list of blood tests to get done as well as the
GTT, all the rest come back ok, but of course my sugar levels were not.
Brian :)

Brian 10-08-2007 03:28 AM

Quote:

Originally Posted by Megan (Post 155818)
......outcomes of which I'm sure we are all aware of, but often do not necessarily take seriously - soft drink consumption!

http://www.medscape.com/viewarticle/560344

Jason your question: ‘Also why do people with pre-diabetes get PN when people with long standing diabetes don't get it’, has me totally puzzled too. It just doesn’t make a lot of sense. I wonder if there are other as yet undiscovered comorbid conditions related to this! I went to a diabetologist/endocrinologist a couple of weeks ago and he totally denied that there was a connection BUT that is NOT what the published literature that I have been reading, is saying.

Also from Jason’s post: ‘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’. That is the same with the neurologist I went to. Only used some ‘tools’ on hand – nothing computerised to test sensations and proprioception. Do neurologists usually have this equipment in their rooms or do you have to get QST done as a separate test in a specialised lab?

Hi Megan, i was sent down to the Alfred hospital for the QST , it's no big deal only a small computorized thing with some electrodes.
Brian :)

mrsD 10-08-2007 08:48 AM

another test:
 
This test may be useful for you too, Jason:

http://www.labtestsonline.org/unders.../a1c/test.html

This gives a level over longer periods of time... sort of an average.
If it is elevated, then you are no longer pre-diabetic.

Dakota 10-08-2007 07:00 PM

Megan, I could not access the article. What did it say about soft drinks?

Megan 10-08-2007 08:13 PM

To Susan
 
Hi Susan (just noticed that your name is Susan),

I've sent you a pm with the link and a cut and paste in case the link still doesn't work.

Megan

Dakota 10-09-2007 11:25 PM

That was very nice of you to go to that trouble for me! I was quite interested, as I have a malignant, carnal relationship with Diet Coke with Lime. Now I see it for the tawdry affair it was. Sigh. I will mourn the break up, but try to move on with my life. Maybe I will be seduced by a glass of fresh, clean water tomorrow, and it will develop into a lifetime relationship.

Megan 10-10-2007 12:46 AM

Very funny Susan...
 
...maybe squeeze some fresh lime/lemon juice into the water....very refreshing! It is a matter of retraining ourselves and our taste buds. I've found that after a while of having healthier alternatives you wonder what you ever saw in the former 'tawdry affair'.

Carbonated drinks are also reputed to prevent calcium absorption into bones which can of course lead to osteoporosis. So there's another good reason to end that Diet Coke affair!

Megan 10-10-2007 01:26 AM

Very funny Susan...
 
...maybe squeeze some fresh lime/lemon juice into the water....very refreshing! It is a matter of retraining ourselves and our taste buds. I've found that after a while of having healthier alternatives you wonder what you ever saw in the former 'tawdry affair'.

Carbonated drinks are also reputed to prevent calcium absorption into bones which can of course lead to osteoporosis. So there's another good reason to end that Diet Coke affair!

Silverlady 10-10-2007 07:37 AM

ovoid the diet or other soft drinks
 
You DON'T want to have a sacral fracture. I've never had any thing so painful before. You think PN is painful. It's a walk in the park (yeah I know it's bad I have it) compared to the sacral fractures. And soft brittle bones are from osteoporosis. Anything that degrades bones should be advoided.

Billye

Dakota 10-10-2007 07:19 PM

My bone density studies are okay so far, but that's not something I want to tempt fate with. So I will take your advice, Billye. I believe you about the pain of sacral fractures. But have you been able to hear me screaming in withdrawal this afternoon? And I think Coca Cola stock dropped.


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