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

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

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. 's - j

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

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

--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).

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