Idiopathic small fiber neuropathy
 

Hi, this is my first post, am totally new to this sort of thing. I started reading your posts over the last few weeks and decided I should join. You all have provided so much helpful information, very appreciated for the newly diagnosed.

I began having back pain and nerve symptoms last October, and after months of tests, was diagnosed in january through skin biopsy with idiopathic small fiber neuropathy. I have gripping pain in my feet and freezing burning pain in my feet, legs, torso, back and neck. My hands mostly just go numb periodically, mostly at night in my sleep. In the midst of this, in December, I had an extremely painful attack in my face which took me to the ER and was diagnosed with trigeminal neuralgia. In hindsight, my doctors do not believe its that but somehow related to the rest. Have any of you had this connected to your trigeminal nerve?

I am taking 2700 mg of gabapentin, Tramadol, Nortriptyline at night, and just finishing 2 month trial of steroid infusions. None of it seems to help.

I have seen mention from a few of you about a smaller subset of non length dependent type of SFN, given my body wide symptoms, am wondering if I fit in that category. And if so, is this something to pursue that might lead to an identification of an underlying cause or different treatment plan?

Thanks for listening,
SFNgirl

Great name by the way!
 

Hello SFNgirl.

I'm sorry to hear about all the pain and crap you are experiencing. The face incident sounds really sore. As I understand it, anything close to a diagnosis of "trigeminal neuralgia" is about as bad as it gets.

The typical portrayal of symptoms in cases of SFN begins with a "glove or stocking" pattern, meaning the symptoms typically begin in the hands or the feet (or both). The progression over time includes further symptoms going from these peripheral areas up the arms or legs towards the "trunk" of the body. In other words there is a natural progression which follows a systematic "length dependent" pattern.

The "non-length dependent" SFN diagnosis does not follow the typical progression noted above. One way of figuring out if you have non-length dependent version is to systematically review the presentation of your symptoms--did they start in other places on your body before they started in your hands and/or feet? Did they jump to your torso/face before they worked up your arms and/or legs?

There is a good possibility that the nerve biopsy you had done during earlier testing will confirm your diagnoses of NLD SFN/G. You should ask your doctors. The word "idiopathic" in your diagnosis likely refers to either: a) an unknown etiology of your SFN, b) aytpical progression of your SFN without confirmatory evidence of NLD SFN/G; or c) NLD SFN/G as confirmed by the biopsy.

Most physicians don't have an understanding of NLD SFN/G because this is a rare diagnosis. I can't remember the specifics but I seem to recall that it affects only about 5% of the population of those referred to specialized neurology clinics. Most regular MDs just never run into it, even those who specialize in diabetes where SFN is unfortunately fairly common. Where did you have your testing done? I know that UC has the Center for Peripheral Neuropathy which might be good for a second opinion, etc. I'm sure there are other great clinics in your area but I was just reading about this one.

Anyway, hang in there. Which reminds me that the primary treatment for NLD SFN/G is pain management and trying to live a healthy lifestyle. For pain management people often end up having to go with time-release tramadol or time-release morphine (Avinza) or time-release Oxycodone (OxyContin). Hopefully you don't have to go there, but if you do, I hope it helps.

I'd be happy to talk more if you need a friendly sounding board,

Mike

Thanks for the very helpful reply. It sounds as though you have nld SFN, and is the /g for ganglionopathy? Since I posted my question, I had a follow up w my neurologist and it seems in his notes he now defined mine as nld SFN. So I guess thats sort of official. I am considering going for second opinion, but thinking mayo or Hopkins which my primary doc recommends.

In my case, it's hard to tell based on your explanation of nld pattern. Everything all started in my low back, and as I am (was) a runner, I assumed and my primary doc assumed it was a disc issue. After a while, I started having weird pains and freezing sensations down my left leg and then more significantly in my left foot. The strange freezing feeling then was going across my low back, felt like I had used Ben gay or icy hot cream, like a cold burning feeling. I then can't say the exact order as to upper back, right leg and foot and hands beginning to go numb. But it certainly did not follow a systematic pattern. In the midst of testing and meeting a neurologist, I had the face thing, still a mystery as my neuro does not know how it could be connected. It seems to me it must either be related to SFN or was actually a fluke jaw thing, because during the attack my bite was actually off and then settled back to normal after the attack subsided. Was absolutely the most pain I have felt in my life.

In your case, is it idiopathic or have they determined a cause? My neuro has ordered a few last tests, CT scan of chest and abdomen (looking for malignincies which he said he does not believe will be the case thankfully), but he ordered paraneoplastic panel and another autoantibody panel. He said he is now looking for very rare things, but most likely going to be a focus on pain management as you suggest. I am taking time release Tramadol and it helps a bit but not nearly enough. I have just weened off gabapentin (from 2700). And about to try lyrica to see if better results w less side effects. Have you had luck w any particular pain mgt strategy?

Thanks for the info

Eitiology of NLD SFN/G
 

I pulled the following quote out of a 2010 article by Kenneth C. Gorson from Tufts University. His earlier work (2008) describing the NLD SFN/G (yes the G is for Ganglionopathy, and the N is for Neuronopathy rather than Neuropathy which is used in typically used to describe LD SFN) was the first article which explained adequately the symptoms that I had/am experiencing. (Sorry, I’m pretty sure that last sentence was too long and hard to read.)

Here the reference to the 2008 study (I think you might be able to get it off the internet if you are interested):

Gorson KC, Herrmann DN, Thiagarajan R, et al. Non-length dependent small fibre neuropathy/ ganglionopathy. J Neurol Neurosurg Psychiatry 2008;79: Pages 163-9.

And finally the 2010 quote:

“A distinctive clinical pattern of burning neuropathic pain and small fibre sensory loss involving proximal regions of the limbs, trunk and face has been characterized clinically and by the spatial distribution of skin biopsy abnormalities as a non-length-dependent small fibre neuropathy / ganglionopathy.

“The cause of this curious disorder remains unknown in the majority of patients, but investigators have postulated that the pathology may be localized to the dorsal root ganglia subserving small nerve fibers. The condition has been associated with diabetes mellitus, Sjögren syndrome, celiac disease and other inflammatory or autoimmune diseases in some cases.” [Note: some other association has been with rheumatoid arthritis, hepatitis C virus, Lymes disease, Crohn’s disease, and cancers/chemotherapy but many cases are “ideopathic”]

“This disorder, which is rare but probably under recognized, can be distinguished from the all too- frequent length-dependent, distal small fibre neuropathy (SFN) by the topographical distribution of abnormalities on skin biopsy; an abnormal intraepidermal nerve fibre density (IEND) of proximal and distal regions, or a disproportionately reduced IEND at proximal sites, suggests a non-length-dependent process.”

Yes I have non-length dependent small fiber neuronopathy / ganglionopathy. Mine is likely from the association with Type II diabetes but who knows?? You have to be willing to to have a high tolerance for dealing with ambiguity, chaos and conflicting opinions when having this problem, working with MDs, trying to figure out which way is best path forward, etc. I’m not sure if you will have a similar insight at some point in your struggle, but a year or two ago, I realized that I had more knowledge of this than the MDs I was seeing. Right now I would be happy finding an MD who would be willing to make an honest effort just to learn about it. Sounds like you Docs are better.

I have a burning face pain and so I pay attention to information on trigeminal neuralgia, etc. FYI, and based on nothing specific, my brain seems to recall at this time that some people have head pain a) in the forehead, around the eyes, nose, and cheek area, b) in the scalp and “hair” area; and c) inside the mouth and on the tongue. I am sure I have read about other areas (neck, shoulders) involved as well.

One time my wife stopped me from going out the door to get an extreme haircut. I came to the conclusion that a haircut would stop my head from hurting. I guess now it sounds pretty stupid but at the time it "sounded like a plan!" :D

The thing with face pain is that you become a walking set-up man for every wanna-be comedian in town:
Them, "How are you today Mike?"
Me, "My face hurts."
Them, "Yeah, (insert your joke here)".

Moving on, here is to the start of a great week!!

One of the leading experts--
 

--on neuronopathy/ganglionopathy at Johns Hopkins is Dr. Abhay Moghekar (who I have personally corresponded with in the past); he's written a number of papers about this and how hard it is to diagnose definitively, at least until we get better ways of imaging the dorsal root ganglia--although there are some new technologies that have improved such imaging (though they are not yet widely available).

We've certainly discussed this in a few threads in the past:

http://neurotalk.psychcentral.com/ar.../t-110411.html

http://neurotalk.psychcentral.com/ar.../t-142219.html

small nerve fibre sensory neuronopathy
 

I have only been dealing with this since Sept 20, 2013, but it came on fast and severe.. From my experience, something unknown attacked my body while I was abroad (toxic, virus, internal malfunction) Initially I was left with Constant Bilateral Facial pain that started in my left clogged ear, but when they irrigated it it spread to my left side of my face and quickly to both sides. It stayed like that for 3 months until my feet, legs, and hands started to get involved.


I'm 25 and was very healthy, but that part does not matter as much anymore, I would trade my healthy look a million times over to actually feel healthy,, but of course I have completed hundreds of tests and been to many neurologists whom until recently said it was all in my head..


It wasn't until I had an appointment with an Autonomic Nervous System Neurologist @ the Mayo Clinic did I get some answers. Of course again all the blood work comes back normal (but there were some oddities during my tilt table test) and per the post above the Dr. confirmed they just can't look into this as detailed as they would like due to lack of technology.

What they could tell me was that my autonomic nervous system was affected, and that was why myself and someone could have free floating adrenaline rushes or other strange sensations. The hard part with the small nerve fibres is that they literally run up and down the entire body.

Gabapentin has given me minimal relief as well, for it seems whatever is going on inside of me is more powerful than the medicine and just runs it over unless i'm drugged to the point of questioning the point of existance.

The neuronapathy is destructible in my instance so far only my clonazepam. But be ready for some changes.. It might not happen to you, but I had sever self derealization to begin with and led me to try to get off of it 3 times before i realized it's pain relief along with its side effects were still worth it.

I understand it is an addictive drug, but it is long lasting and if it works for you I think it is the best option until medical community gets a better grasp on how to treat this disorder.

Some other things that work for me is that I am in bed by 9pm and usually sleep restlessly till about 6:00 I than stay in bed another hour or two and try to enjoy the fact that my nerves are quieted.

This gives me a few hours of nice relief until I start to have to rely on my medication to get through the rest of the day.

6:00 am - Gapapentin 300mg
9:00 am - Clonazepam .5 mg
12:00 pm - Gapapentin 300mg
3:00 pm - Gapapentin 300mg
6:00 pm - Gapapentin 300mg
9:00 pm - Clonazepam .5 mg


p.s. does anyone know the best doctors or technology available to actually look into the dorsal root ganglion or whois leading the way in how to best to treat central pain syndrome.

Thanks
Casey

Hi everyone,

Well, after a year-long medical saga, idiopathic SFSN is finally my diagnosis. I'm not sure how "standard" my symptoms are though. I'm just going to list them as briefly as I can:

- My lower left leg has tingled and twitched for about 30 years. No known cause. I described the tingle as being more like I was standing on a vibrating floor. Sometimes it was painful at night.

- Last year, it felt like it was getting worse, and then all of the sudden it moved in to my right leg as well.

- An additional symptom is now that I have referred sensation into my feet. If I rub any body part from my mid-torso on down, the electrical sensation in my foot on that side of my body gets stronger.

- I'm also lucky to be "blessed" with this prickly feeling from head to toe on occasion, and when it's at its worst, I literally feel like I'm plugged into an electrical socket and am buzzing. And also when at its worst, I have bizarre sensations in my temples.

- Another feature is cold sensitivity. I'll get chilled to the bone for no reason.

Do these symptoms sound familiar to anyone? I've seen anyone report a decade-long problem that suddenly got worse.

I've had all the usual tests to rule things out, but have not had a punch test. My neuro said it would confirm the diagnosis, but wouldn't tell us why this was happening. The only stone left unturned in my neuro's mind in the possibility of an activated virus like Epstein Barr or Herpes Zoster, both of which are known viruses I have. (The symptoms in my left leg started about two years after a multi-month bout with mono.)

I'm also not ruling out some poorly understood metabolic issue, a hormonal issue, or even something going on in my spine that's impacting my spinal cord/CNS function even though MRIs show nothing. (Why mid-torso down for the referred sensation?)

Has anybody had any luck going from idiopathic to a known underlying cause? As I've read something 50% of all cases of SFSN are idiopathic, there must something big they're missing.

Any thoughts appreciated. Even just having people to commiserate with would be comforting. I've felt like I was losing my mind for awhile.

Janie
Baltimore

Welcome janieg. :Wave-Hello:

Not sure how many replies you will get as it has been awhile since anyone posted. Hopefully, someone will be along.

Welcome!
I did have the punch biopsy done and was diagnosed with SFN. I understand how it feels to be told it is idiopathic. I've actually come to hate that word. That being said I have come to realize I can't drive myself crazy trying to find out what caused all this.

I've had SFN for 6 years now. In the beginning I went to many different doctors. I even went down to Hopkins. All this with no real answers. Every doctor has a different opinion (guess) and wants to try a different med. I can't take most of the meds so I take a few and try to do my best with what I have.

Don't get me wrong, I still search for answers but once in a while. Not every minute of every day.

I totally agree with you. They are missing something that causes neuropathy. My GP ( who left sadly) told me they are only beginning to locate antibodies that cause this. He said maybe mine was caused by an antibody they don't know about yet.

Could be true!

Hey there janieg :)
 

Janie
Baltimore[/QUOTE]

Has anybody had any luck going from idiopathic to a known underlying cause? As I've read something 50% of all cases of SFSN are idiopathic, there must something big they're missing.

Hello Janie :)

Confirming my dx was what drove me crazy. I wanted to know what type of neuropathy I had. I was pretty sure it was due to being pre-diabetic and then having 6 rounds of chemo (taxol/carbo) since the sudden and horribly painful onset was almost exactly a month after chemo ended.

I asked a foot and ankle dr I had seen 2 times to do a skin punch biopsy and he did.....severe small fiber neuropathy.

Most of the dr's I've seen chalk it up to diabetes so who knows ? :)

Take care and keep us posted.

Debi from Georgia

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. :Wave-Hello:

Mayo may be one of the facilities to investigate--
 

--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.

Don't have a lot of time now--
 

--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.

Hi Glenn,

Any idea what threads you might have posted them on? I quickly scrolled through 2 pages of posts, and didn't see anything obvious.

Here's one of them--
 

Thanks much. I'll check out the links.

That's very interesting to hear your connection btwn small fiber & trigeminal neuralgia. I have had peripheral neuropathy (Related to antibodies) for a year and in the past 3-4 months have been experiencing lancinating pains on my right face and was curious if it was trigeminal but haven't addressed it with my doctor yet out of fear he would think I'm crazy-- since your trigeminal is a a cranial nerve, whereas your small fiber neuropathy is a disorder of the peripheral nervous system.

I would only think that the two are related if you have a disorder affecting your central nervous system (brain and spinal cord).

If you have risk factors for trigeminal neuralgia (history of blood vessel disorders, multiple sclerosis, age 40-60) that would likely make you consider that it may have been a separate, isolated incident.

It would be interesting to hear back if you find out the link.

-J

I'm just wondering if anyone else with ISFN has good days and bad days with the disorder. I will have the occasional very bad day with much more discomfort than normal, and I'll have to double up on my gabapentin dose to stand a chance at getting to sleep. The symptoms may not seem worse during, but really flare at night.

I'm trying to figure what I might be doing, if anything, to cause the really bad days. I had one on Wednesday, and there were two things different from the norm that day: 1) I spent about 5 hours sitting in a car 2) I ate more gluten (bread) than I've eaten in awhile.

I'm waiting on the results of a food sensitivity test in case something like gluten is involved, but the sitting is curious to me. Yesterday I went out and played 18 holes of golf, and didn't have more than "normal" discomfort last night.

Has anyone found that being sedentary worsens their symptoms?

Thanks.

Janie

I have to take extra pain meds for any car ride over 30 minutes. I am extremely tall though (6'2"). We take breaks every hour or so for me to walk around. Airplane seats are extremely painful. I think it is very likely that the car ride had something to do with your pain increasing.

Thanks, Susanne. This is something I'm going to keep tabs on. It doesn't bode well for going back to work at a desk job.

I find that huge rapid drops in barometric
Pressure (weather) will cause me grief
Many times.

We had a monsterous storm up here
On vacation that lasted over 24 hrs and
By some coinkydink my back flared up
With severe pain that totally incapacitates
Me. I am using Lidoderm patches and
Tramadol with flexeril (small dose of it)
Just to be able to walk.

I am not going to be able to drive our
Second car home alone with our stuff
And had to arrange for our son to get
Up here to rescue me and drive me
Home! This is a first for me!
We have delayed our closing up to next
Friday... I hope the weather holds.. Sigh

Recently Dx with Idiopathic small fiber neuorpathy
 

as a result of a skin biopsy. But, my symptoms are primarily constant burning in my hands.

I get the stabbing lightening strikes in my feet, luckily it is only a couple of times a week. Last week I thought I stepped on a nail, but when I looked nothing was there. I guess if you had that level of pain constantly, you would have to pre-medicate with a lot of strong opiates. Although I have found that opiates have very little effect. Mostly my pain is constant burning in hands and feet radiating up to the knees and elbows.
Only one more month before I get my skin biopsy, to test for SFN. Not that it will help me, as I already know I have it! But maybe the doctor will get something out of it...

Please post back if you learn anything. My neuro said we could do the punch biopsy to confirm the SFN, but said it wouldn't tell us anything beyond that. And since he was confident in his diagnosis, he didn't feel it was necessary.

If the neurologist already confirmed that you have SFN, the punch test will not improve the diagnosi, since he has already Dx you with SFN. Now if for instance, you were to get the DNA test that showed CMT then he would be able to give you a more definitive answer. But even then, there wouldn't be a cure... The only time a Dx is real important is if it can be reversed in time, or if it proves to be suggestive of having more serious life threatening results. Right now Neurologists and Rheumitologists are just poking a stick in a dark room, they have no clue how to treat or cure PN.

one reason that you might want to insist on a skin punch biopsy is so that you can measure your progress over time. It would give you a current baseline. You can do additional skin punch biopsies in the future to see if you are improving or getting worse.

My neuro & GP said they won't do another one. I don't know why but I asked both and they said no. Said it wasn't needed.

That is sad to hear this. Repeat biopsies (especially after a course of treatment) to gauge improvement or disease progression is one of the best features of the biopsy.

How else can they tell if the fiber density has increased or gotten worse? You could consider printing some of the documentation that supports repeat biopsies...if you think they would even read it or be open to the idea. New medical technology does no good when doctors stop being teachable.

Thanks for all the additional information on the punch test.

This in the category of "for what it's worth," as I still don't quite know what to make of it, and I won't be discussing it in depth with my doctor for a couple of weeks.

After reading that 50% of all SFN cases are attributed to diabetes or pre-diabetes, and knowing that I have neither, but I do have issues with hypoglycemia, I requested an Oral Glucose Tolerance Test. In this test, they make you fast, drink this really sweet drink, and then test your glucose a 1/2 hour, an hour and two hours later. Oh, and they take a baseline fasting glucose level before you drink the stuff too.

As always, my fasting glucose was well below even pre-diabetic levels, but at the 1/2 mark, I was out of range too high, and then I came back in range at some point afterwards. (I'm still waiting for LabCorp to get their crap together two-weeks post-test and post my full results to my account so I can see them, but that's what the doc told me over the phone.) What the test didn't catch was that I became hypoglycemic at the 3 hour mark, but I expected that.

Anyways, what this test confirmed is that I do have a glucose metabolism issue with high spikes. Whether or not these issues could be responsible for the SFN, I don't know, but I'll be pursuing that. I have a glucose meter and will be experimenting and logging results just to see how prevalent these spikes are. I've not seen an endocrinologist yet, but that may be the next step. And for now, I'm treating myself as if I am diabetic and and am eating accordingly.

There are certainly reports--
 

--of people who have evidence of neuropathy, particularly painful small-fiber types, from glucose "spiking" that would not meet the criteria for frank diabetes to most doctors, just as there are reports of similar neuropathies in those whose fasting blood sugar levels are not in the "diabetes" range, but in the "impaired glucose tolerance" range.

Interesting that you note the "reactive" hypoglycemia at 3 hours, after the glucose tolerance test was ostensibly over. I have written here in the past that when I get a glucose tolerance test, I insist on an extended one with more frequent draws--baseline, every half-hour through three hours, then at four and five hours---along with analysis of insulin as well as glucose levels. The pattern of glucose rise and fall along with lagging insulin rise and fall--in particular, an overproduction of insulin to the moderate amount of glucose one drinks in these tests causing a driving down of glucose to hypoglycemic levels in the latter part of the test--is often an indication of insulin resistance in the tissues, which is a precursor to impaired glucose metabolism. (I have experienced this for many years; it seems to run in my family, and it is one reason I am very careful with dietary composition and timing.)

Thanks, Glenn. I'm doing a lot more reading on this.

For what it's worth, my fasting glucose is always in the low 80s and my A1c in the low 5% area. Neither fall in the range of even pre-diabetic.

Earlier, I found this seemingly good article by docs at the Cleveland Clinic.

http://www.ccjm.org/content/76/5/297.full

"Research findings strongly suggest that even prediabetes is a risk factor for small fiber neuropathy, and that so-called “impaired glucose tolerance neuropathy” may represent the earliest stage of diabetic neuropathy."

I've already set about changing my diet to a "diabetic diet." While I'm only slightly overweight and generally quite active, I have had a tendency to have a high carb diet that, while low in sugar consumption, is high in whole grains. I'd go days without eating meat and be perfectly content.

I'm working closely with a good friend now who is a severe diabetic after having had most of her pancreas removed. She has done a ton of research, and has been helping tremendously with supplement information as well as diet recommendations. She has also recommended "Dr. Bernstein's Diabetes Solution" book.

Searching my name and lists of posts--
 

--on this forum will bring up a number of links I have to lists of similar articles on neuropathy afflicting those with "merely" impaired glucose tolerance before frank diabetes.

Reactive hypoglycemia is quite frequently a precursor to impaired glucose tolerance. It's good to hear that at least your fasting glucose in quite good--but the logical question is what fasting insulin levels is it taking to keep it there. Quite frequently an insulin resistant person needs to produce a good deal of insulin to hold blood glucose levels in a "normal" range; as the beta cells of the pancreas tire and wear out over years from this activity suddenly one can get big glucose spikes, and impaired levels can happen seemingly overnight.

I finally got my hands on my oral glucose tolerance test results. Based on what I've read, they are not indicative of IGT, but I'm not sure about that because my doctor (not a PCT or diabetes expert) said something was out of range.

I became hypoglycemic at about the 2 1/2 hour mark, so my glucose was crashing, but any input on these numbers would be appreciated.

Fasting 80
1/2 hour 144
1 hour 181
2 hours 71

Thanks.
Janie