Hello and pleased to meet you!
 

Hi all! Words cannot express how happy I am to have found you! My head is swimming with questions but I’ll do my best not to bombard you with them. I also do solemnly swear (right hand raised) to exercise due diligence in searching the forum before asking those questions.

As I remarked before in another thread, I don’t have a full story yet as I’m scheduled for more bloodwork and a QSART, but here’s where I am now:

• Began having PN symptoms (burning pain on sides/tips of big toes) a little over 2-1/2 years ago
  
  
• Pain is now intermittently showing up on all parts of my feet and up the backs of my calves almost up to my knees
  
  
• Not diabetic (although I’ve had blood sugar show up borderline high twice—nobody seems concerned or suggests doing anything about it, so I’m a little puzzled about that. Do you ever feel like nobody’s paying attention?)
  
  
• EMG was negative, so no large nerve problems yet, I guess

That’s about all I can list at this point except to say that right before the PN started, I began exercising, eating strictly healthy food, and quit smoking cold turkey after 35 years. Since doing all those wonderful things, I have had this neuropathy start, had a TAH and radiation for uterine cancer (no chemo), began to suffer from “visceral hypersensitivity” (which I suspect is doctor speak for “darned if I know”), and this year had a total hip replacement. I know, I know, these things cannot possibly have any cause and effect relationship, but yanno, it can really tick a gal off—you feel just fine, but start doing everything they tell you to do, and see what happens? :eek:

I really look forward to communicating with you all! Did I mention how happy I am to have found you guys?

Welcome to our forum.

If you have had some borderline sugars...you could have pre-diabetic neuropathy. Doctors just don't understand this.

I'd get a fasting INSULIN level drawn, and if it is elevated, that would point to this problem. Also get an HbA1C.

Some supplements may help you. Have you had B12 and Vit D measured? This should be done ASAP.

Also do you use statins for cholesterol? Or have you taken antibiotics recently... Flagyl, Cipro or Levaquin? These may cause PN. Yearly flu shots? those may be problematic too.
Many other things, including toxins, should be looked for.

There are things you can do for yourself. But they won't be covered on insurance, so you need to decide if it is worth it to you to try them over the counter.

i think you should go to mcdonalds and have a cigarette!
i ran for a good part of my life up to 8 miles a day, was in great shape, didnt smoke, didnt drink, no drugs, hiked, did weight training and got PN anyway. Sometimes i think maybe i should have smoked and drank. You can definitely drive yourself crazy trying to figure out what caused your PN. Mrs. D has given you a good starting place and go from there depending on results. If the pain is affecting your life have it treated.

Any doctor that says prediabetes can't cause neuropathy does not know what they are talking about, we are not all the same, some full blown diabetics never get neuropathy but others do and the same goes for prediabetics.
Being high borderline on two tests would be a real concern for me, the docs should be telling you to avoid slipping into a full blown diabetic by eating low GI foods & excercise regularly & loose weight if that is an issue.

Thanks mrsD! To answer your questions:

OK, I went back to look at some blood work I had in July, before I went to the neuro. (haven’t gotten the first neuro report back yet) but the fasting glucose this time was 93, so that’s within the normal range, isn’t it? I recall having gotten one or two around 120 in the past (which is the high I was refering to before), so I guess it’s at least something I should keep an eye on frequently. And I will ask about the HbA1C. This test was from my PCP, who got me really upset about the PN (for example saying Gabapentin has no effect on PN…say what?!) and other things, so I have since switched to a new PCP. I at least did make sure that the neuro got a copy of this.

Also from this test, the B12 was 886. From what I’ve read in the B12 sticky, that is pretty good, yes? But I’m pretty sure that I had started supplementing before this test, so maybe I was deficient before I started taking the B12.

No statins. Antibiotics—have been taking Doxycycline for rosacea, but began that after the PN started. At any rate, I’ve recently questioned whether taking antibiotics on a prolonged basis is wise anyway. It just seems wrong to me.

Flu shots—I’ve only started getting them recently, but can’t remember if the PN started before or after my first one. I think it was before, but still, maybe they could be exacerbating the PN.

Oh, and the vitamin D—this test says the following:

Vitamin D, 25-Hydroxy…34
Vitamin D, 25-OH,D3…21
Vitamin D, 25-OH, D2…13

I have no idea what those numbers mean, but I did show a D deficiency about a year before that and was supplementing for that with a prescription that I didn’t refill. Bad girl! But I have been taking OTC D...maybe not enough.

Well, hope we’ll know more when I get the report for the first and second round of blood work from the neuro. I wonder if she saw something in the first one that made her order the second one.

Hahahahaha!

Well, it was just the irony of being pretty healthy, but after doing all these "good" things, everything went kerflooey between cancer, PN, and the "visceral hypersensitivity". The last entailed a long saga of tests that you don't even want to know about, and I'm still living with it since giving it a fancy name didn't really help it.

Oh, and Brian, losing weight is an issue--after quitting smoking, I gained 35 pounds. Ya just have to laugh; it's better than crying.

This video, which is long, is however one of the best of the new
informational videos on new Vit D information:

http://www.youtube.com/watch?v=TQ-qekFoi-o

It will inspire you to take enough D3 to improve those levels.;)

Hi Joan, have you had a glucose tolerance test to check if your prediabetic or diabetic.

Vit D, Glucose Tolerance & New Info from Neuro
 

Thanks for the link, mrsD. Now I have an idea what those numbers mean and what I should aim for.

Brian, I'm not sure if I ever had the glucose tolerance test--I remember having tests where I had to drink things, but with the digestive system stuff I was trying to solve, it could have been any one of them instead. Like I said, I had a zillion tests and can't remember anymore. I'll ask my neuro about that.

Just got a call from the neuro's PA. She said that my B6 level was way too high (she didn't know the number, but I'll get the report), and that I should stop taking any supplements containing it, including multiple vitamins! B6 in high levels can be toxic, of course, and can even cause PN, but my PN started before I was taking any supplements, so I think that's not the primary cause.

BTW, I just realized that energy drinks and some vitamin waters also contain B6, so I have to watch that too. Here I thought that the high levels of B vitamins in those would be a good thing for PN, but apparently not for me because of the B6. Oops!

You may be one of those people, who does not convert B6 to its active form. Hence it builds up in the system. P-5-P is the activated form, and better tolerated.

Most doctors do not know this... pyridoxal kinase enzyme in the liver converts pyridoxine from diet and vitamins to its active form called pyridoxal phosphate. This may fail because of drugs used, or genetic failures. Almost all combo OTC vitamins contain regular inactive B6 called pyridoxine. Unless of course otherwise stated on the label.

Also some people read high on B6... mostly in the autistic community.
Here is my B6 thread:
http://neurotalk.psychcentral.com/thread30724.html

A glucose tolerance test can be anything from 2 hours or up to 5 hours in duration, you have to fast overnight then when you arrive they test your fasting sugar levels, then give you a very sweet drink to consume, after an hour they draw blood again to see how your system is reacting to the sugar challenge, then every hour after that, it's not a bad idea to get insulin levels checked at the same time.
Prior to having a GGT, a doctor sent me for just an overnight fasting glucose test which come back normal, the doc at the time said I did not have any sign of diabetes, how wrong was he, i have since learn't that many full blown diabetic 2 people can have normal fasting sugars, so it is a pretty useless test that a lot of doctors seem to rely on when testing for diabetes.

best of luck anyway
Brian :)

The GTT can be painful/brutal if you get hypoglycemia during it.

And it is only as good as the doctor who can interpret it. Some doctors are poor at this and ignore the low readings as problematic near the end. This is why I suggest a fasting INSULIN instead. This will show elevated insulin, and reflects insulin resistance.

Really high and really low sugar readings I believe impact the nerves. They starve in both scenarios. This is why supplements help, as they improve energy output in the mitochondria of the cells when glucose is unavailable. Acetyl carnitine enables fatty acid metabolism when glucose is low, for whatever reason.

The GGT is also painfully boring if you don't take a good read with you. ;)

When I have mine done now--
 

--I bring an iPod which has been stocked full of National Public Radio podcasts--hours and hours worth. Otherwise, just sitting there between sticks (one is not allowed to exercise, even walk around, as that skews the results) would be maddening.

Great thread on B6, mrsD! Some of it made my head spin a little, but I'll take another stab at trying to understand it all.

It seems like I have several things to shake a stick at now. There's the B6, and then there's the glucose that you all are talking about. But then when I looked again at that old test, I saw this: BUN/CREATININE RATIO: 31.6. Now, this blood work was taken first thing in the morning, when I tend to have had a liquid intake deficit, so maybe that was why. But it seems like a serious enough thing that it should be looked at again(?), not that I'm thinking it's related to PN.

Then I got my script for the additional bood work (I really wish now that I'd make a copy of the other script so I'd know what the neuro ordered before):

Rheumatoid factor
DNA (DS) ABS
Sjogren's ABS

The first one seems pretty straighforward, but I can't rememeber why or even if it has anything to do with PN...maybe she ordered it because I complained about stiffness and joint pain.

The DNA test...I Googled that one and am still clueless. I hope someone here knows (I'm betting on mrsD)

I did find some past discussions here about Sjorgren's and discovered that it can sometimes have some PN effects, but that many docs obstinantly don't recognize the connection. So whether that's the culprit or not, at least my neuro is trying to look at more than just the most obvious causes.

Dehydration can increase BUN... If this was done fasting, you might have not been drinking water enough.

Many drugs can increase BUN too:
http://www.nlm.nih.gov/medlineplus/e...cle/003474.htm
The most common one is the family of thiazide diuretics which are very commonly used for blood pressure ..example hydrochlorothiazide.

I would get tested for gout, since the BUN ratio is elevated.
Long term gout can affect the kidney, as well as cause pain in the feet and elsewhere.

And as far as the other tests--
 

--they are for variations of the anti-nuclear antibody (DS=double stranded); even rheumatoid factor is considered by some to be a variation of that antibody pattern.

And that reason is that all of the anti-nuclear antibody associated vascular/connective tissue disorders can be associated with peripheral neuropathies, either through direct compressive effects or through vascular insufficiency.

Take a look at:

http://neuromuscular.wustl.edu/antib...x.html#vascgen

Thanks for the anti-boredom tips, glenntaj. A good book or interesting programming (I'm an NPR fan too--Wait, Wait, Don't Tell Me and This American Life are my favorites) can sure help!

And yes, mrsD, that's what I was trying to say about the high BUN/Creatinine, that it was probably just dehydration. But I thought in my Googling I read that it could be associated with renal failure, which scared me. I think that maybe it would be easiest to get it tested again when I'm sufficiently hydrated, and if turns out normal, I'd have one less thing on my list to worry about.

And glenntaj, thanks for the link. I will look at it right now and learn what I can.

I really appreciate everyone's input! :grouphug:

Update and question on glenntaj's link
 

I looked at your link, glenntaj, and noticed that throughout that list, I saw "asymmetric". I always characterized my PN as symmetric. My question is, do your symptoms have to be perfectly symmetric to be considered so, or do you just have to have both feet/hands affected in some way? I thought that the latter was the case, and that even though my left big toe might be burning, the side of my right foot is what's hurting at that moment. And this can all change in 15 minutes or less.

No, not at all.
 

Very few people that have neuropathy, from any cause, have truly symmetric neuropathy at all times. Even people who have toxic neuropathy, such as from chemotherapy, may have one part of the body affected more than others--and that part may switch over time, and go back and forth.

Symmetric in the end just means both sides of the body midline have expereinced some effects. Symptoms in just one part of the body consistently imply a mononeuropathy, often becasue some nerve area is particularly vulnerable to compressive effects. Often, what seems to start our asymmetric can affect both sides of the body midline over time, though in different places.