[JoanB]

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?

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

[mrsD]

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.

[echoes long ago]

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.

[Brian]

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.

[JoanB]

Thanks mrsD! To answer your questions:

Originally Posted by mrsD

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

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.

Originally Posted by mrsD

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

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.

Originally Posted by mrsD

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.

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.

[JoanB]

Originally Posted by echoes long ago

i think you should go to mcdonalds and have a cigarette!

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.

[mrsD]

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.

[Brian]

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

[JoanB]

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!

[mrsD]

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