Very Dissapointed
 

I just want everyone to know yesterday the 25th I went to Shands hospital in Jacksonville Florida to the Neuropathy center. I was so dissapointed by my appointment. It was so discouraging. First of all, the doctor told me what me and my husband already knew. I have peripheral neuropathy caused by diabetes. He told us that to see a neurologist is a waste of time. He said I just need to concentrate on a pain management specialist and my PCP doctor. OK, what? Why would you not see someone that is a neurologist? I know for one, I am not going to stop seeing my neuro. Has anyone heard of such a thing?

thanks,
Michele :hug:

I think the best thing to do is read up on diabetic neuropathy. Diabetes is the most common cause of small fiber neuropathy, and there is a great deal written regarding it. It is always difficult to think, 'How could this happen to me and how could there be no way to fix it?' There is an emotional adjustment coming to terms with a chronic disease.

Small fiber neuropathy is not really treatable, unless the CAUSE is treatable. If your cause, is diabetes, which is the most likely reason for SFN in the population, treating (controlling) the diabetes is the logical course to follow. Diabetes is the main issue, PN is due to the diabetes.

Most of the studies done on PN are done on diabetic small fiber neuropathy, so there is a lot of information on it.

Many people on here, do not have diabetes, so that is where things get more complex and confusing when it comes to tests and treatments.

Many folks on the forum have different causes for their different types of PN.

While it is possible for you to have a separate cause for your PN, it is by far the most likely that the diabetes caused it. Pain management and symptom control is the only way they treat axonal small fiber neuropathy.

IVIG is reserved for those people with autoimmune etiology for their neuropathy, such as neuropathy secondary to autoimmune disease such as Sjogren's syndrome, or CIDP.

You may find it helpful to look for clinical studies on diabetic PN if you want to try something else other than symptom management. Of course, really research what you are getting into.

Other than the few who are receiving IVIG, most of us are getting symptom management and pain management. Another good area to concentrate on, is becoming knowledgeable about the options you have for management of the condition.

Getting good diabetic care and control is very important.

It is time for you to try some healing...
First off--- thiamine 200mg-300mg a day or the new Benfotiamine 150mg to 300mg a day is a good choice.
Doctors really don't know how to heal nerves, in my opinion. They just treat and manage pain. I think you can heal, if you know what you are doing.

methylB12, and fish oil also help with healing nerves. Many people on this board have had improvements using nutrients like this.

This is the one I use:
http://www.iherb.com/ProductDetails.aspx?c=1&pid=42

OK I have a few questions about
 

your appointment?
1] Did this doctor [neuro] just look at your records or did he just look at you and 'decide'?
2- Were any new tests conducted [MRI's, blood tests, nerve conduction tests]? While you were there?
I guess I'm just asking HOW did he base his conclusions? I would ask for copies of your entire 'records' from that place to keep and use [or not] for your own education.
I for one, am pretty sure that THAT would NOT be a neuro I ever wanted to see again....No PN is ever THAT definitive. Not to mention that the 'bedside manner' could be improved more than a bit?
Doctor candor is appreciated, but curt dismissal is not what we pay for! Professional courtesy and respect for us the patients at times is becoming extinct.
As for clinical trials at NIH? Here is todays' listing:
http://www.clinicaltrials.gov/ct2/re...AND+neuropathy

One other thing? We all go to new docs HOPING HOPING and HOPING for answers....We have to try and temper our own expectations of what might be done to ease either the pain or progression of the neuropathy[ies]. At times, I feel we all might have better luck winning a lottery?! Sad but true fact of life.
As you've read, there are many folks here who have PN due to pre-diabetes or diabetes. My own DH has type2 and was relatively not to keen on my own PN issues until he got a small dose himself. I wish he had not gotten it? But at the same time, when I've my 'bad days'? I get a heap more consideration than before. On the plus side? He's now far, far better in control of his diabetes and maybe the PN is healing a bit....time will tell!

Also? I am glad that your husband was 'witness' to this 'specialists' comments. No one ever belives you unless it's seen for themselves! My own DH was 'witness' to my first neuro and we both were doing afterwards: Did I just witness/hear/see what I just did? Definitely a problem....
Keep going to your neuro...if things are especially progressing? But DEFINITELY work hard/harder and hardest on controlling that diabetes!
May the pains diminish somewhat tho in time. :hug:'s - j

I think my neurologist pretty much has washed her hands of me as well. I also have DPN (small fiber). She is not my first neurologist either. I live in a small town in Upstate NY and there are few neurologists at all. I have seen neurologists in Burlington, VT but as you stated, they tell you what you already know. She suggested that if I wanted to come back that I could set up a time with her receptionist (giving me the option to bale). However, I made another appointment for 6 months as I do not want to be totally without a neuro.

The other posts are right on about controlling blood sugars. It may not rid you of the PN but it can keep it from progressing. My trouble currently is that I have extreme fatigue and did the sleep apnea test and was told that I do have it - great! I am going back tonight for another night with leads, cords and electrodes...and the CPAP which is the mask-like device that I will be sleeping with. I just hope it helps. I miss spending time with my family, having company for dinner, using my recumbent bike and being "normal"

You are not alone - this is a nasty disease. I try not to think of it as horrible because I know others have it a lot worse than I do.

Take care and good luck.

Cheryl

As long as there is nothing else contributing to your nerve damage other than elevated blood sugars then there is hope for recovery, i know through my own case of PN, the small & large nerves can heal.
The biggest oversight of the current medical approach to diabetes is its failure to recognize that diabetes is a nutritional wasting disease. The elevated blood sugar level acts as an osmotic diuretic by overwhelming the kidneys’ ability to reabsorb glucose and other water-soluble nutrients.
This is why diabetics experience increased urination. Consequently, diabetes causes massive losses of nutrients such as vitamins B-l, B-6 and B-12, and the minerals magnesium, zinc and chromium.

Also you may consider the supplement " Alpha Lipioc acid "
i have lost the url so i copied and pasted from my records the info below-
.................................................. .................................................. .....
Antioxidant Alpha Lipoic Acid (ALA) Significantly Improves Symptoms of Diabetic Neuropathy
Monday, April 07, 2003
ROCHESTER, Minn. — A collaborative study between Mayo Clinic and a medical center in Russia found that alpha lipoic acid (ALA) significantly and rapidly reduces the frequency and severity of symptoms of the most common kind of diabetic neuropathy. Symptoms decreased include burning and sharply cutting pain, prickling sensations and numbness.
The findings appear in the March 2003 issue of Diabetes Care, http://care.diabetesjournals.org/.
"There appears to be a rather large effect on the pain of diabetic neuropathy with ALA," says Peter Dyck, M.D., Mayo Clinic neurologist and peripheral nerve specialist. "The magnitude of the change is considerable. We also found some improvement in neurologic signs and nerve conduction. We were surprised by the magnitude and the rapidity of the response."
When patients were given ALA, also known as thioctic acid, the researchers found statistically significant improvement in the symptoms of diabetic sensorimotor polyneuropathy (DSPN) damage to multiple nerves caused by diabetes. The researchers measured improvement by a total symptom score, a summation of the presence, severity and duration of burning and sharply cutting pain, prickling sensations and numbness. The patients who took ALA saw a 5.7-point total symptom score improvement from the start of the trial, while those who took placebo, an inactive substance, only improved 1.8 points. ALA produced no unfavorable side effects in the patients taking this substance.
"It's very safe," says Dr. Dyck. "There have been no known complications."
The alternatives for managing the symptoms of DSPN — narcotics, analgesics or antiepileptic drugs — are less than ideal, according to Dr. Dyck.
"Most people can't work while on narcotics, and there's the concern about habituation," says Dr. Dyck. "If you take analgesics, you can get kind of dopey."
Dr. Dyck says that the intravenous ALA preparation at the dosage he studied is not available to U.S. physicians. It is available in oral form and in smaller doses in drug stores.
"I think it's a promising lead for the future, in that antioxidants may be implicated in the cause of diabetic neuropathy, and ALA might conceivably be a preventative or interventative," says Dr. Dyck. "It may well be worthwhile for treatment, but I'd rather patients with diabetic neuropathy not go out swallowing large amounts of this drug yet. It isn't Food and Drug Administration-approved for this purpose."
Dr. Dyck adds that a large, multi-center trial of oral ALA is under way. "We should see what the further data show before we give this widely to patients with diabetic neuropathy," says Dr. Dyck.
Mayo Clinic physicians Dr. Dyck, Phillip Low, M.D., and William Litchy, M.D., were involved in the design and helped oversee the phase 3 study, which included 120 type 1 or 2 diabetic patients, ages 18-74, with DSPN. The study was conducted at the Russian Medical Academy for Advanced Studies in Moscow. After hospital admission, patients were randomized, or selected by chance, to receive either ALA or a placebo in 14 intravenous doses over three weeks, following one week in which all participants received placebo. The study was double-blinded, thus neither patients nor investigators knew which patients received each substance. The researchers then measured the severity and constancy of each patient's symptoms of burning and sharply cutting pain, prickling sensations and numbness. Trial participants' progress was measured by written surveys in addition to testing nerve conduction, function of the autonomic nervous system function and sensation.
If the drug proved effective in this trial, the researchers also wanted to find out why it worked. They found that ALA improves the nerve function damaged by chronic hyperglycemia, or the condition when patients' blood sugars consistently are not under proper control.
"It is known that ALA is a very strong antioxidant," says Dr. Dyck. "High glucose in diabetes leaves trace chemicals harmful to cells — that process is called oxidative stress. If you burn something in the oven, it leaves soot. Similarly, in disease, there is 'soot,' and there are mechanisms that relieve 'soot.' Antioxidants promote getting rid of oxidative stress products.
"Oxidative stress is known to be implicated in many disease processes, including diabetic neuropathy," he adds. "If nerve fibers partially degenerate, you get pain and prickling and other symptoms of diabetic neuropathy."
Since 1959, physicians in Germany have treated diabetic neuropathy with ALA. However, there was insufficient research evidence to warrant its use, Dr. Dyck says. The manufacturer of ALA, a German company called Viatris Inc. (formerly ASTA Medica, Inc.), approached Dr. Dyck and other physicians about conducting clinical trials with this supplement to test its effectiveness in alleviating diabetic neuropathy.
Diabetic neuropathy may compromise a person's quality of life. Previous studies have shown that patients with this syndrome may become depressed or anxious and may have trouble with work, social obligations, sleep and other daily activities.
Although regulating patients' blood-sugar levels is the ideal way to prevent diabetic neuropathy, physicians have recognized that not all patients can or will control their blood sugars to the needed degree, according to Dr. Dyck. Some patients do not monitor their glucose levels or use their insulin injections or pumps often enough. For other patients, such as type 1 diabetics, blood sugars may fluctuate wildly and prove difficult to control tightly.
.................................................. .................................................. ....
also some info about the supplement " Gamma Linolenic Acid "

There is some good news from Great Britain. Nutritional supplements of gamma linolenic acid, an essential fat, effectively slows down, stops, and even reverses the progression of diabetic peripheral neuropathy. Without
questions it is the best treatment available for this condition. Gamma linolenic acid (GLA) commonly found in seed oils such as corn oil and sesame oil. However, in order for the body to use the linoleic acid, it must convert it into
GLA by adding an additional double bond between two carbon atoms. In diabetics, the enzyme systems necessary
for this conversion are lost or hampered. Consequently, the body can’t convert linoleic acid into GLA, the active
component. However, as in so many other incidences, plants have come to the rescue, converting linoleic acid into
GLA.
As previously noted, In a British study, 111 patients with diabetic neuropathv were given either a placebo or 480 mg of GLA daily. Sixteen measurements were made throughout the study, and at the end of a year, the group taking the GLA improved in all 16 measurements. The researchers concluded that “administration of GLA to patients with mild diabetic poly-neuropathy may prevent deterioration, and, in some cases, reverse the condition.” I suggest that all diabetics start GLA supplementation at about 400-600 mg a day.
.................................................. .................................................. ..
i hope this helps,
Brian :)

Michele,

Most of our experiences with neuros on this forum are similar to yours, or worse (my first was much worse). I think the neurologist gave you good advice. Good PCPs see the big picture and can help you get and stay healthy. The healthier you are, the better your nerves and brain will function. Your brain is the ultimate seat of the pain you are experiencing. The more you can calm and soothe your central nervous system, the more pain relief you'll experience day in and day out as things heal and return to the way nature intends them to be. If you have type II diabetes, you can do a lot to lesson or eliminate it with changes in diet, with the right supplements, and with exercise. Again, a good PCP who cares is best to manage your diabetes, with specialist referrals as needed.

I know that your PN hurts a lot, but pain notwithstanding, exercise will do a lot to reduce the background level of pain, calm your brain, and reduce your diabetes. Regarding exercise, the first neurologist I saw, an idiot whose arrogance was only exceeded by his incompetence , told me to stay off of my feet. The pain just got worse and worse, to the point where I had an application for a handicapped parking permit ready to fill out.

Then, another neuro told me to exercise daily as much as I could without causing overuse injury. He said that exercise, while painful while you do it, can't damage my nerves and could only help. So I started walking, hobbling really, or bicycling every day, and started yoga. After a few months, it didn't seem to help the PN because the pain was still really bad, especially when walking. But then I realized that the PN pain wasn't keeping me up at night. Some nights I actually slept without waking up once. Also, I slowly regained my balance and stopped tripping all the time. More objectively, my ankle reflex went from 0 on my left foot and 50% on my right, to 50% (now 100%) on my left foot and 100 % on my right, as measured by a neurologist.

One caveat is that if you start exercising, be gentle on yourself. Start slowly and build slowly. I got a great pedometer from Amazon that is inexpensive, accurate and trouble free ( http://www.amazon.com/Omron-HJ-112-D...6568647&sr=8-1 ). If you get it, be sure to NOT clip it on your belt. It works fine in a pocket or purse where it won't snap off and get lost. Slowly, over a period of a year or so, build up to at least 10,000 steps a day from awakening to going to sleep. That's the recommended minimum steps a day according to my cardiologist. Obviously if you have arthritis or other health issue that too much walking can make worse, you should do many fewer steps or pick another exercise. Walking is what we are best at of all animals, and is what our body excels at. It gets the heart going, brings fresh blood to all our nerves and muscles, and tones the muscles, nerves, and bones. Walking's rhythmical nature sets up a pain relieving healthy pattern in our nerves, spine, and brain that overrides the erroneous and painful PN pattern and eventually retrains our nervous system to the way its supposed to be.

My PN has continued to improve over the years, with some regressions. I'm not totally OK, but my usual pain level has reduced from a usual 7-9 on the 0-10 scale, to 1-3 now (about 1 as I type this, after a 3 mile brisk walk with my dog). What I did and what I'm doing now is posted at http://neurotalk.psychcentral.com/thread177-2.html , #'s 18-20 down the page.

As the quote says, "Miracles sometimes occur, but one has to work terribly hard for them." I agree with the other posts here. Learn what you need to learn, take responsibility for your own healing, and then act on what you learn. With this approach, doctors are important resources for you, as is this forum, books, the web, your family, and your spiritual life. None is the one big thing that will make you better. That approach makes your jerk of a neurologist much easier to take.

Salud amiga.:)

If you aswered any of the following escuse,not a good day.
Diabetic 1 or 2
Are you over weight.If so are you making every effort to lose it.
What came first the PN or the Diabetes?
Do you test your sugar level, what is normal for you.
Have you only had a 12 hr. over night fast.
What tests has your Neuro done for you,skip any thing that has to do
with diabetes,
Read anything that has been posted,darlek is very good at research.
Many rehab centers with a group of Dr.S as PT.are if your lucky ,a pain Dr.
will say go through everything as you know PN is very painful..
Please take Mrsd advice there is nothing I see she has listed that can hurt
you. You have been to a good place,but they are not aways a cure all.
they seem to fix in on the Diabetes and the are not always wrong. When
many Dr.s found out I was a nurse for many years they assume I can
heal myself..Ha that would save alot of time and money...I have decided
well almost what I want...But you must do what is good for you.

Get the diabetes under control ,weigh skinny people have it as well,and PN
does hurt,read C. post very good..Dr;s are not always right,some are Dr's
because it make's Mon and Dad happy...

More counties in Mo. have flooded and the rain continues,makes me hurt,
C do a snow dance enough is enough...Hugs to all Sue:(

Michele,

I will just attempt to answer your general question. A good PCP and ESPECIALLY a GOOD PM are worth their weight in gold when it comes to managing the pain. I would be soooooo lost without my PM. Grant you he is a spinal PM but his background is also in Anesthesiology and Internal Medicine. My PCP is good too but I save him for coughs and colds and that sort of thing. I DO go back and forth between my PM and Neurologist though. But, for the most part, it is my PM I see on a regular basis. I am glad everyone else addressed the diabetes issues.

Don't Understand
 

Kathi, I guess I am just confused that the doctor said we would be waisting our time with a neurologist. Wouldn't he be the one that would diagnoss any kind of neurologist problems?

thanks,
Michele:hug:

I don't think you would be wasting your time checking out all other possibilities that can cause neuropathy, not all diabetics get neuropathy, it's just that is a very common cause, that's all.
good luck
Brian :)

M
 

If you have a good Neuro, I do she works with my PM,not all do,just
speak up and talk it through. Your Diabetes,if there's a good Climic at your
hospital get a scrip to go.I think you were let down..WE are all scared
but we are also far stronger then we think we are..Perhaps he was
telling you to get the pain under control,we sure have that.Alot of
PM's willl want your family Dr. your Neuro expain what is wrong
so they know how to treat..Sounds hard,I got into a good PM but
he wamted a lot more information from my neuro first..She did a
bunch of tests,put me in rehab for 14 days..I stayed with my neuro,
for the PN and PM. If you must travel far this may be hard,i'm
sure K will explain what she when through..Hugs to all Sue

Michele:

Since you have been diagnosed with diabetic neuropathy, you know why you have neuropathy!!!

Now you have to concentrate on keeping your blood sugars at a good number. What meds are you on? Are you overweight for your height??

These are important questions.

If your doctor thought that anything else was causing the neuropathy, he probably would have said 'get this type of blood test, or get a spinal tap".

I gather you have not had a spinal tap?? This would rule out or confirm any auto immune stuff going on.

I have diabetes. I also have neuropathy. I was very foolish and never watched my weight, my numbers, etc. etc. I learned a hard lesson.

But I also take Methyl B-12 which really helped with the burning in my feet. I lost the weight and I think of food as fuel for my body, not self-medicating my mind anymore. I had to learn it the hard way.

If you want to rule out anything, then by all means, go and see a neuro, he'll order the necessary tests, and you can rule out major stuff.

But if you know you have diabetic neuropathy, then concentrate on controlling your blood sugar, keeping a good weight, taking your meds, and taking Methyl B-12 (as well as the other nutrients that Mrs. D mentioned.

Also, you can try using a TENS unit. Many people have found benefits from using this pain management gadget.

Best of luck.

I am with Shiney Sue here. It was my Neurologist that did the battery of tests but it was my PM that worked in conjunction with her and myself to sort out other issues since I have spinal disorders. But since they are saying diabetes I think my next step would be with an Endocrinologist (Diabetes). I am just saying that PM's can REALLY help you to sort things out and can help manage the pain. Neurologists can too. But in my experience it has been my PM that was my savior. He did NOT like the "idiopathic" diagnosis of small fiber PN. Especially after EVERYTHING came back negative. So, he really sat down with me and went through everything. Since then my Neurologist has changed that diagnosis to Central Pain Syndrome. Now, that, he is in agreement with based on spinal issues and severe ongoing pain PRIOR to any surgeries. It makes more sense to me as well. I'll just say for now he detests anything that comes back as idiopathic or a wastebasket diagnosis of Fibromyalgia (his words). As he says...pain happens for a REASON. And if diabetes is the issue, then I would definitely find a Specialist for that.

Michele I THINK you've
 

gotten a lot of different viewpoints as to what you should do. Now, It's up to you to figgure out what YOU SHOULD do?
Be aware, that IF there were some easy solution for PN pain we all would not be here. Shucks, we would all be off having fun and making boodles of money or something!
As you go to see new docs, I know how easy it can be to expect: Some AH-HA! moment and all is explained and take this pill and all will be well! It is never ever that way. It usually consists of some long road of diet, medication, exercise, supplements and, to me most important: ONE DURN GOOD ATTITUDE!
The attitude is what essentially won my current neuro over on my own behalf. Willing to try, to learn, to speak up when things are good or not. And to keep up that silly stupid HOPE! I keep telling myself I'm not nearly as bad as I could be? [Would be BAAD IF I'd kept my first neuro!-still shuddering at that thought!] and knowing that as long as I STRIVE for some, any improvements I'm not losing ground! I count little things, such as being able to walk X more steps than the day before w/o serious pay-back, being able to have an attention span that's greater than a gnat due to meds, and any other positives that I can find.
Exercise does help, stimulates the circulation that in turn helps nerves regrow or recover. Gets that circulation going to help your overal vascular system. That all in turn helps you metabolize foods better and avoid many diabetic issues.
We should expect a lot? But, getting anything useful to help in the dealing with this stuff is often the best we GET. I truly wish it were better and more satisfying tho.
I don't think you are wasting time w/the neuro at all! I do agree with others that a good endocrinologist on the 'team' would definitely be a dynamite pair tho....They come to your problem from different 'angles' and will/can work together to work hard on you for you to get you where you best can be? If I were you, I'd ask your GP and neuro for a reference or three...'Interview' some endos and see which one you'd like as well. That way, you'd be 'watched' from all possible problem areas and could avoid really potential nasties down the road.
SHOULD your neuropathy get worse? YOU are gonna have to prove and document that you have been working and working HARD to get your diabetes issues under control before any doc is gonna try to look further for other potential diabetes or other issues. That is plain common sense.
I can only give you some of these: :hug:'s and encouragement for now. As well as a bit of courage - it takes courage to deal with this all. I suspect that you have lots! - j

Appointment
 

We brought all my records since lst August with all the tests. He read them and when he cae back told me I had PN caused by diabetes. He didn't suggest to do any blood work or any other tests. I was trying to tell him how I thought the neuropathy was moving to other parts of my body and he just dismissed it. He just kept harping on seeing a pain management doctor and do not see the neurologist. I just don;t understand why we would stop seeing the neuro. Isn't he the one that knows a lot about neuro diseases? thanks....Michele :hug:

Hon.

Don't know if you know this but diabetic neuropathy does move to different parts of your body. Sometimes it just takes longer. That's why good blood glucose control is EXTREMELY IMPORTANT. So the neuropathy doesn't progress to it's fullest progression.

Your doc probably thinks "well, she's diabetic, her neuopathy is progressing, so all we can do now is pain management".

That might OR MIGHT NOT be the case.

And while you should be finding ways to manager your pain, a visit to an endocrinologist is in order, as well as a visit to a Neurologist that SPECIALIZES in neuropathy.

That way you get as much information as you need.

It's an uphill climb, I know.

I have a friend with a diabetic stomach and another with a diabetic bladder. Sometimes, it hits the eyes.

Diabetes affects the whole body. Some people just thing it affects the feet. This is not the case.

I don't know where you believe your neuropathy has spread to. Do you mind sharing this with us??

Melody

Diabetic neuropathy--
 

--can, on occassion, occur acutely or sub-acutely, and can affect many different parts of the body--the extremities, the trunk, the autonomic systems:

http://neuromuscular.wustl.edu/nothe...etes.htm#acute

Unfortunately, far too many doctors are only familiar with the most common presentation of burning pain in the extremities--the classic "stocking and glove" distribution--and are not knowledgable enough, or inclined, to further investigate symptoms once one is labelled diabetic.

While a good primary care physician is invaluable, unusual presentations generally demand specialists--and SUB-specialists. I not only think you should consult with a neurologist, but one who specializes in neuropathy. Not many do, and those that do are often affiliated with teaching hospitals or large research clinics, and are familiar with the recent research and state of knowledge about the disorder.

In the same vein, if you consult with an endocrinologist, you should try to see one who is familiar with diabetic neuropathy, and not just diabetes.

Admittedly, it's hard to get a handle on how much a neuro or endo knows in a first appointment (unless you've gotten some good patient recommendations). And there are distance and insurance considerations, of course.

Many of us have found that the best knowledge of neuropathy comes from the large tertiary clinical/research centers--Hopkins, Cornell Weill, Massachusetts General, Jack Miller in Chicago, Jacksonville Shands (I'm frankly surprised at the treatment you received there--it is a well-known place for investigations of unusual symptoms, and apparently you didn't get past this "gatekeeper"); doctors here often perform research as well as see patients, and are more familiar with "unusual" presentations/cases.

Certainly, diabetes is a common cause of neuropathy. But when an unusual pattern of symptoms occurs, one should not accept a verdict that that is the ONLY thing going on. Further testing is necessary to rule out other conditons that cause neuropathy (or find them). Many of us are "co-morbid"; certainly diabetes can come with other issues--nutritional problems, gluten sensitivity, thyroid issues, hypertriglyceridemia, autoimmune inflammation--that can cause neuropathy in their own right.

Though it's been mentioned before, a good place to look are the Liza Jane spreadsheets at www.lizajane.org; these are a compendium of almost any test that many of the best minds here could think of tohelp diagnose neuropathy-causing conditions. It's also a great way to track test results over time.

It's certainly possible your neuropathy is attributable in sum to diabetes, but it also behooves you to work with specialists who take your complaints seriously (though it may take time and trial and error to find these people) and who are willing to order more testing. The interaction with that doctor as you report smacks of physician laziness, and probably also pre-judgment (the "if you're type II diabetic from poor eating and exercise habits you deserve what you get" kind).

Glenn
 

is so right if you go to a good hospital and the one you when to is,
but the gatekeeper,could very well of been a 4th year resident. They
are the ones who check on all records,tell you why your there
if his eye got stuck on the Diabetic think,yes,let's get them to
focus on that..That is not easy to put off at that place,so how
does it happen..He may have been tired,no excuse..Did you only
see 1 neuro,well I doubt that,but if it did,I wonder how overbooked they
were still no excuse..

If you read about Billye's trip to Mayo,by car through a Bilzzard from
Dallas Texas.She was put through the ringer as was Fanfair, I will
never forget the tests some new and some repeats not once but
twice for me.. But 2 different reasons. Mayo almost always keeps you
there longer than tell you. I went to Cleveland Cliinic as well But had friends
and a relative in both places and place to stay. That was nice but would
of prefered a place I could vent..

My mother use to put out the kleenex,well you or I cry if it's ok and cry
if it's not. Then I had to go on Dissabilility,Oh did I miss that good insurance,
but I was lucky and got on it with no trouble..I have been lucky to have
2 Neuro's that work with each other,And I will be going to Barnes Jewish
for another problem,I'm still a bit in shock but not afraid,bht when and if
I talk about it.well 2 soon

Talking about diabeties well this people don'y they realize i'm in pain,we
have no doubt your in pain there is PN yes and polyneuropathy's.
And did you have a head-on-collision,was your spine damaged,there
are more reasons and different kinds of pain than we know,my opinion
we read all the stickies be brave,look at the pictures,and after being
a diabetic for a long time make sure your Neuro does not focus on that,
Make sure all Drs. you work with know about PN a very wise man just
said a bit ago ,there are some family Drs. that can handle it,or get you
to a good neuro that specialices in PN..But what tests did they
do,how long were you there,and how many different Drs. did you
see. Thanks don't lose your sence of humor,now that could make
you hit me with a chair,I can't pick one up ,but blasted I still can use
my elbows to fight back. These are smart people but you are ,the
gatekeeper was wrong..We my 12 year old had cancer ! woke up
at 1 and Dr. I though was shaking me and she was loud,that hospital
let the parents stay,but 20 yrs olds who helped us all,rang the bell
and the nurse came down a threw the med. student out,me I was wondering
where I was..My son slep through it so stupid that nitwit he got in so
much trouble,as he should,ahhh boy My son was awake and that 20 yr
old and my son whipered jokes the rest of the night so I could sleep.
Hope you are. Hugs Sue ps You can vent

Yes I do
 

Melody, yes I know why I have pn and it's because of my diabetes. I have a neuro and really like him. This is my 2nd neuro, the first one was a dud.
My blood sugars are under control and of course I could afford to drop about 50lbs.
I take humalog and lantus for my sugars and cymbalta and lyrica for the pain. However it doesn't take my burning pain away sometimes.
I believe I am still in the grieving process because of the pain and the diagnosis.
Anyways thank you for being their for me and others. It helps to know their are words of wisdom from you and other people out there.

thanks,
Micele

I get the burning also, and the Methyl B-12 helps me tremendously with that.

I take 22 units of Lantus (when I started at Cornell I was on 46 units of Lantus and 2000 of the Metformin.

I also lost a ton of weight. You have no idea how this helps THE WHOLE BODY.

So I wish you much luck in your endeavors.

take care,