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Old 03-27-2008, 04:13 PM
glenntaj glenntaj is offline
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Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
glenntaj glenntaj is offline
Magnate
 
Join Date: Aug 2006
Location: Queens, NY
Posts: 2,857
15 yr Member
Default 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).

Last edited by glenntaj; 03-28-2008 at 06:27 AM.
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