Hi everyone. I'm so happy but at the same time confused. My neuro's assistant just called. ALL Evoked Potentials came back normal along with my Lumbar MRI showing only a mild bulge at L4/L5. So, this still doesn't explain my burning feet. He has two more tests he 'd like to check out and they are bloodwork to check for copper or zinc and a serolu plasmin (sp?) test. I couldn't understand what she said, even she didn't know how to pronounce it. Anyway, it's to check for levels of copper/zinc which can also cause my symptom.

Secondly, he's upping my Gabapentin since the 1pill 300 mg is not working. Now another thing about my blood sugars. I am not diabetic, however, I do have a monitor because I had Gestational Diabetes (6 years ago) and I am also at high risk for it. So, I do check it periodically and they have been higher now in the last week or so. I honestly don't know if it's the Gabapentin (which I started a month ago) causing my higher BS's or it's because I friggen gained 6 lbs. since taking it and now I am diabetic!!? Uggggh. My number last night 2 hours after eating was 176. Now, it was 126 this AM before breakfast. I was told to just keep an eye on it. Does anyone, first of all does Gabapentin (Neurotonin) make you gain weight and can it also raise BS's?

Thirdly, he said if I like, I can get a second opinion from a Dr. (he named him and where he's at), I could. Do I get a 2nd opinion? Sheesh, it's like he's offered it to me if I wanted to. However, I do feel comfortable with this doc and believe he's doing everything in his power to rule out MS (which he has!) This is what I have had so far that have ruled it out completely according to him.

Brain MRI (punctate areas of high signal intensity in Centrum Semiovale) - according to him Virchow-Robin Spaces and normal.
Cervical and Thoracic - MRI - No lesions but a mess with bulges and herniations.
Nerve Conduction Studies - Normal.
SSEP - Normal
VEP - Normal
BAEP - Normal
Lumbar MRI - Normal - but with a mild bulge at L4/L5.
Bloodwork: Lyme Titer, Lupus Panel, ANNA 1 and 2, VDRL, Immunoe/Extrophoresis, and B12

What do you think? Any advice appreciated. Especially about the 2nd opinion perhaps on the brain MRI which was done in early October. It's already been 3 months. Geese, I do not want MS, but I have this feeling deep down in the pit of my stomach it's either MS or Peripheral Neuropathy of some kind. However, he hasn't said he's completely ruled out PN, but what other tests for PN are there? I think I've had everything possible to rule out both of these conditions. I feel like I am at a loss to what I should call this evil thing I am feeling right now as I sit and type this, burning feet and now it's to the point it's not just when I sit, it's when I stand or even lay down. So, it's getting worse

Small fiber neuropathy is not usually picked up on any of those tests.

You can get a definitive answer with an epidermal nerve fiber density biopsy. If you want to know where to get one in your area, PM me.

--you haven't gotten anywhere near a complete work-up yet, though what you have is a decent start.

Cycelops is correct, but you may want to check out that diabetic possibility more closely. The numbers you report are borderline, and certainly fall into the category of imparied glucose tolerance, which is increasingly being recognized as a cause of neuropathy, especially painful small-fiber neuropathy (the type most typical in diabetics). In fact, it is now referred to in some literature as pre-diabetic neuropathy.

You should take a look also at the Liza Jane spreadhseets for neuro testing at www.lizajane.org. These are excellent not only for suggesting further testing, but for keeping track of test results/patterns over time.

You did mention that your upper spinal MRI's showed no lesions, but are a mess of herniations--is it possible that some pressure is being put on a nerve root or the cord there somewhere from those? You can get neural symptoms from nerve compression anywhere from the dermatome of that spinal level downwards--e.g., cervical cord problems can result in lower limb symtpoms, not just upper limb ones. (What exactly did those MRI's say--which brings up another point: do you have copies of all your test results/reports?)

Some stuff on impaired glucose tolerance as a cause of neuropathy:

http://millercenter.uchicago.edu/lea...diabetes.shtml

http://care.diabetesjournals.org/cgi...full/24/8/1448

http://care.diabetesjournals.org/cgi...full/29/6/1294

http://www.jabfm.org/cgi/content/full/17/2/127

The good news is that if prediabet'es is the cause of your nerve damage it is fully reversable, through a sensible diet and exercise, my PN was caused through prediabetes & i was low in b12 and now i am nearly healed.
I have seen many posts were people using Neurotin have stacked on the weight, i did try it first up myself but couldn't tolerant the med, but if i would really work at keeping your blood sugars to good levels, Glentaj is spot on. trouble is a lot of doc's don't think that prediabetes can cause PN, they think that you have to be a full blown diabetic for many years before any nerve damage happens which is not correct, depends on the individual, some full blown diabetic people don't get any nerve damage or it takes years but there is ever increasing evidence that SOME can get nerve damage in the early stages of diabetes when it's at borderline diabetes stage.
good luck
Brian

skin biopsy, as glenntaj recommends, PLUS, there are loads of bloodtests listed on www.lizajane.org, which you ought to print out and bring to your neuro for discussion. Most people have no problems getting their doctors to draw the bloods; they're generally happy to see the organized charts.

And keep copies of all your results.

Good luck.

I don't have PN but know a number of people who do, so I do have interest in it.

It seems so many go through test after test (and I guess necessary to not miss something) before finally calling it PN.

But not knowing still doesn't address the pain. Have the doctors provided anything to at least help in getting some relief of the pain?

Ron

Everyone above has already posted a lot of information, so I don't have much to add. My feet are burning tonight though, and I have/may have/don't know if I have or not-Sjogren's...

You know, I take injectible B12 every week and it seems to help with the burning... You might want to try it. It won't hurt you. It is water soluble and your body just uses it if you need it and eliminates it in urine if it is not needed. A number of people I know are using this for PN pain...

Good luck,
Cathie

WOW, I am so blessed to have so many responses to my post. First off, I wanted to give you an update. I went and gave blood this am and swung over to the diabetes educ center - they gave me a new monitor. It is black and small and nice! I am going to really keep track of my BS's.

YorkieMom- so if my B12 test came back normal, do you think I would still benefit from taking injectible B12 and where on earth would I get something like that? LOL - is that a prescription or OTC? I am also going to look in to Sjorgens - I think my doc tested me for that though, cause I know he mentioned it at my appt. Thanks.

RluckyL - currently, the only thing he is doing for the burning pain is Neurotonin (Gabapentin) - he upped/doubled my dose starting today cause that first dose is not working. I am feeling less burning already - I started taking the 2 pills last nite. I hope it continues througout the day, that would be awesome. But it is definataly there, but "less".

LizaJane - I will ask about the skin biopsy too. Wow LisaJane has a lot of info there. I need to get copies of all my stuff from this neurologist. I have copes of all my records up to October 07. THANK YOU for that website!

Brian, I do believe I have been considered "prediabetic" for a few years now, at least 5. Sooooo, perhaps throughout the years, I have had high BS's and not known it, I don't know. But I can tell when it's high for sure when I was pregnant, I really felt AWFUL, I mean BAD. And I know when I feel low and I need to eat. But up until a month ago, my BS's have always been normal when I tested them, which wasn't very often. Sooo, now I am definately doing it all day long to get a better reading of where they are at. I truly do't think I can have PN FROM diabetes, cause I don't have it - my husband has it and I know what it's all about - he's on insulin and OTC meds and uncontrolled most of the time - and it's not pretty when he gets highs and lows. THANK YOU.


and...Glenn, yes, my Spinal MRI's are very interesting. If you really want to see them, here they are below. Now, my neuro did not have any concern over these results even though they are touching spinal cord. But, perhaps that is why I need to get a 2nd opinion after all. I truly think my neck is causing these problems, or perhaps my lumbar area? The weird thing is, two years my lower back had two small herniations L4/L5/S1, facet hypertrophy all over my spine and a tear in the anulus. Now, I have one mild bulge at L4/L5? How can that be?

As for a complete workup - WOW, there is a lot more that can be done. I have bookmarked LJ website and I am going to get everything together, that is awesome. Anyway, thanks for all your information. I did go to those websites and I suppose it could very well be pre-diabetes - that's kind of scary to me - no it IS scary. I told my neuro "I do not have diabetes" at my appt. and so he did not bother to test me for it. My BS's were fine since October cause that is when my Chiro said I should monitor my BS's cause maybe my burning feet were from diabetes. SO I did just that, and they have been normalup until about a week ago.

Here's my MRI results (don't have LUMBAR yet): (warning long LOL )

MRI Thoracic Spine without Contrast.

T1, T2 and T2 fat saturation sagittal sequences, and T1 and T2 weighted axial images were obtained.

The vertebrae are normally aligned. The stature of the vertebral bodies is maintained. Disk spaces appear to be preserved. The spinal cord is of normal signal and morphology.

At T7-8 there is is a small right paramedian protrusion of the nucleus polposus which effaces the ventral aspect of the thecal sac and appears to touch the cord. There is no foraminal stenosis seen.

Impression: Small right paramedian protrusion of the nucleus pulposus at T7-8. This small protrusion appears to touch the ventral aspect of the spinal cord, but there is no evidence of spinal or foraminal stenosis. The spinal cord is unremarkable in appearance and signal.

MRI Cervical Spine without Contrast.

The vertebrae are normally aligned. Stature of the vertebral bodies is maintained. Spinal cord is of normal morphology with exception of ventral impression on the cord in the left paramedian location at C6-7 secondary to moderate protrusion of the nucleus pulposus.

There is no evidence of tonsillar herniation, and the foramen magnum is normal in appearance.

There is mild/moderate broad-based bulging in the disk/endplate complex at C5-6, but this finding does not cause impression on the spinal cord, there is no spinal or foraminal stenosis at this level.

Impression: Significant protrusion of the nucleus pulposus at C6-7, finding is positioned in the left paramedian location and causes mild ventral impression on the spinal cord. It is also possible that this finding may impinge the traversing left C8 root. Otherwise unremarkable MRI of the cervical spine.

--they are interesting, and definitely worth second opinions/interpretations.

You do have some disc bulging/protusion in both the cervical and throacic spine, but, while I'm not a doctor (and it wouldn't be a bad idea to get some opinions from our Spinal Disorders forum), my sense is if these were impinging on your cord enough to cause your burning, you'd probably have more widespread symptoms. I think it's more likely this may have to do with blood sugar levels (or some other uncovered etiology).

Generally, random blood sugar testing, or even hemoglobin A1c readings, will only reveal severely dysregulated glucose situations--and the blood sugar readings are notoriously variable depending on time of day, what and when you've eaten, etc. If one of your docs would go for it, I'd recommend a 3 hour or longer glucose tolerance test from a fasting start, with glucose and insulin levels measured before the glucose challenge and then every half-hour. The test is boring, and you feel like a pincushion, but there have been a lot of people who only discovered they had imparied glucose tolerance this way, during the reaction to glucose challenge. (The insulin levels are important for seeing the patterns of your reactons--the insulin rise to the glucose and how severe it is; an overproduction of insulin usually signals insulin resistance even if your glucose levels do not rise to diabetic levels, and this is a precursor to impaired glucose tolerance.)

Hon:

You said: "so if my B12 test came back normal, do you think I would still benefit from taking injectible B12 and where on earth would I get something like that? LOL - is that a prescription or OTC? I am also going to look in to Sjorgens - I think my doc tested me for that though, cause I know he mentioned it at my appt. Thanks."


What passes for a normal B-12 level reading is NOT NORMAL. There is too much of a gap between not normal and normal.

When you have neuropathy, you should aim for 4 digit readings.

I take 3000 of the Methyl B-12 each morning on an empty stomach. I take the sublingual form. I believe this is better than an injectible. Others will come on board and explain this to you.

I had horrible burning. The b-12 methyl, helped me tremendously. I get it from iherb.com. I initially started with 1000 of the Methyl, then I knew I would need the 5000. I was taking the 5000 for quite some months with great results.

Then they had a sale and it was for the 3000 with Folic Acid and Vitamin C.

This is good BUT NOT AS GOOD AS WHEN I WAS ON THE 5000.

So when this runs out, I'm going right back to the 5000 I was taking every morning. You get lots of energy and the burning, well the difference (in my case) was amazing.

Just wanted to share.

Melody