Thanks for the replies. Obviously I have company...unfortunately.

I'm not giving up yet, but am getting close. My alt med doctor is willing to keep at it with me, so I'm going to give it a few more shots I'm taking some tests that I don't "normal" doctors would order, so we'll see if something turns up.

Next up will be a test by this lab by Cyrex Labs. They won't let me post a link, so you can Google it if you like. I like what they say, though:

"Cyrex™ addresses the cross-connections between the body’s endocrine, gastrointestinal and neurological systems which play a significant role in the development of today’s complex disorders."

I was diagnosed with Idiopathic Small Fiber neuropathy in 2012 at Barnes Jewish in St. Louis, MO. Since, my neuro doctor and I have had a hard time communicating on symptoms and questions over the phone to a point that my primary care physician is thinking of sending me to Mayos. Is there one particular facility that specializes in this disorder or that folks have had good luck with?

Tony
Missouri

Welcome wildcovey.

--though in my admittedly anecdotal experience talking to neuropathy sufferers nationwide, other names come up more frequently:

Cornell Weill Center (New York)
Jack Miller Center (Chicago)
Johns Hopkins (Baltimore)
Jacksonville Shands (Jacksonville FL)
Massachusetts General (Boston)
Washington University neuromuscular (St. Louis)
University of California San Francisco hospital

All of these have one thing in common--they are centers of research into neuropathy, with famous neuropathy researchers affiliated with them, many of whom have written very influential papers on testing, diagnosis, and treatment. Many of these can be found in our "Useful Websites" section of the board.

Mayo Clinic in Rochester MN certainly meets this description, with Dr. Peter Dyck, who has been studying neuropathy for decades. His son Peter James Bonham Dyck is also on staff in the neurology dept. so don't get confused by this.

http://www.mayo.edu/research/faculty...d/bio-00025843

"Peter J. Dyck, M.D., directs the Peripheral Nerve Research Laboratory. He is an authority on peripheral neuropathy, having been involved in the original description of some varieties of neuropathy (chronic inflammatory demyelinating polyneuropathy and inherited polyneuropathies), edited 12 textbooks on the subject of peripheral neuropathies, and been involved in pivotal trials of treatment of peripheral neuropathies."

Ron

In doing research today, I came across this interesting research article from 13 years ago:

Oops, again I can't post a link yet. I apparently have to have non-spammy posts before I can. That being said if you Google "neuropathy glucose," you'll see a hit near the top of the results with the subject "Increased Prevalence of Impaired Glucose Tolerance..." and a link to an article with the URL *edit*
For those not wanting to read the whole article, the gist of it is that this study showed that people with normal fasting glucose may still have small fiber neuropathy because of Impaired Glucose Tolerance that wouldn't show up in a basic blood screening test.

"OBJECTIVE—To characterize a cohort of patients with neuropathy and impaired glucose tolerance (IGT) but no other identifiable cause of neuropathy.:

"RESULTS—A total of 13 of the 107 patients had diabetes, whereas 36 (34%) had IGT (Impaired Glucose Tolerance), nearly three times the prevalence in age-matched control subjects (P < 0.01). OGTT (2 hour Oral Glucose Tolerance Test) was often elevated, whereas both fasting plasma glucose and HbA1c were normal."

"CONCLUSIONS—Our results suggest that IGT may cause or contribute to small-fiber neuropathy, which is similar in phenotype to the painful sensory neuropathy commonly encountered in diabetes. Two-hour OGTT is more sensitive than other measures of glucose handling in screening these patients."

Has anyone here with idiopathic SFN had additional glucose testing done?


Thanks.

Jane

I'm having the Oral Glucose Tolerance Test tomorrow.

--but searching posts under my name will bring up numerous links to articles regarding neuropathy from impaired glucose tolerance that I have posted in the past; it has become evident that nerve damage can occur well before one might receive a diagnosis of frank diabetes.

Unfortunately, many doctors still believe that one must be diabetic for some time before developing neuropathy.

* I have idiopathic SFN and have had an oral glucose test, and the results were normal. It's something you should check out, but don't get your hopes up. There are many, many other possible causes. Did you get your B-12 checked. You might start taking supplements (methylcobalamin 1000-5000mcg per day).
Ron

Yes, had my B-12 checked as well as the more important associated methylmalonic acid. Here are all the tests or things I've had checked so far:

- Four MRIs brain to lumbar, no sign of MS lesions or stenosis
- Spinal tap - no sign of MS, Lymes or autoimmune issues
- Lots of bloodwork - full usual panel, full thyroid, and autoimmune work-up
- NutraEval nutritional deficiency work-up (low on some things, but not critically so. Am now taking an alpha-lipoic acid supplement)
- Hormone workup - other than elevated cortisol levels nothing out of whack

As of today, I took the Oral Glucose Tolerance Test. I became hypoglycemic 3 1/2 hours after I drank the surgary stuff and AFTER they had done the four blood draws. I wasn't happy about that.

I'm also going to take a food sensitivity test to see if I have anything in that realm that I have problems with. After that, I think I'm done. The only thing I won't have followed up on is the possibility that a virus is involved, like Epstein-Barr.