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-
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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.
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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.
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i hope this helps,
Brian

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.

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

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

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.

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