[FlyingSquirrel]

I was recently diagnosed with sensorimotor axonal polyneuropathy. They have ruled out a multitude of causes, including: Diabetes, Multiple Sclerosis, Sarcoidosis, Lupus, Celiac and vitamin b12 deficiency.

They gave me a homocysteine blood test (normal) and my b12 bloodwork came back at 881. I had been taking methyl B12 and stopped after I got the test results. Within a few weeks I got vertigo, tingling in my arms (neuropathy is in my feet normally) diarrhea (sorry for the overshare!) and my balance problems became much worse. I went back on the b12 and it all cleared up after a few days. Although it doesn't seem to help my feet at all.

Is it possible to still have a b12 deficiency or malabsorption issue with normal b12 levels and normal homocysteine test?

CBC values were normal too- MCV = 91, MCHC = 35

Thanks for listening...

[echoes long ago]

you may have only had normal homocystine and b12 results because you were already taking b12. i would continue taking at least 1000 mcg of b12 a day since it helps you.

[FlyingSquirrel]

Thanks echo! I will definitely continue with the b12! I was wondering if there are any other tests I should request to find out if that (b12 def or malabsorption) is what is causing my neuropathy. I, like so many here, am still hoping to find the cause, so I can start the proper treatment.

[Stacy2012]

My B12 came back at 4,000!!!

I still take high doses every day. The blood serum test includes active and INACTIVE B12 in the gut. The only way to get more acurate is do the active test which I have not been able to do.

Also, I don't know how you were tested for diabetes, but my dr told me I do not have it after doing a fasting blood serum that came back at 90 which is considered "normal". However a fasting glucose is a snapshot at that moment and my own personal research says that by the time a dr will give a diabetes diagnosis its been going on a LONG time, and PN could already be present.

So, I bought a glucose meter this week. Im on day 3 and I have diagnosed MYSELF as prediabetic, which means I believe after testing 5 or 6 times a day, fasting, 1 hr after and 2 hr after meals and at bedtime, my numbers are higher than a normal count. 1 cup of white rice made me shoot to 156 and a normal person with no problems should not spike that high and stay there after an hour.

Anyway, all that to say, you cant always cound on dr's or "normal" numbers, do your own indepth research and you will find most of these normal numbers are wrong.

Oh, fyi, i have PN and my own belief is it is from diabetes, even though its not full blown, I believe my blood glucose levels have been high enough for a long enough time to give me PN. Dr believes it is my thyroid. Either way, I am treating both and doing other supplements.

good luck!

[FlyingSquirrel]

Hi Stacy! 4000...Holy smokes! My a1c was 5.5 and my PCP said that neuropathy caused by diabetes only strikes those who have had uncontrolled diabetes for many years. Although, I sometimes suspect he is still going off information he obtained in med school in the 80s! Then again, my neurologist didn't think it was diabetes either. I will request an active B12 serum test and see about a glucose tolerance test...I have a nerve biopsy coming up in a few weeks, so maybe that will show something. Thanks again!

[Sallysblooms]

Stacy, I am so glad you are testing at home. I think most people would see interesting numbers if they tested after simple carbs, sugar. I am not diabetic and my numbers from my doctors tests and at home are always good unless I eat a lot of a simple carbs, but getting off of the sugars and simple carbs have been half of the answer for my healing, supplements are the other half. Nerves need a level glucose and you don't have to be diabetic to go up and down.

You learn a LOT testing at home don't you? Potatoes, rice etc will really get numbers up.

Spiking even if it comes down is now finally being thought of as not good. I am glad my doctor realized this was going to help me even with good test results.

[Stacy2012]

Sally, I agree!

And I am definately cutting out white flour, sugar, junk as much as possible, I am not a sweets eater, dont care for sugar, chocolate, much, except special times and holidays.

However, I love bread, potatoes, french fries, pasta, which is just as bad. My aunt said I couldnt have diabetes, cuz I only drink water and do not like sugar. I said ya but I LOVE LOVE LOVE bread and all the other bad stuff.

My fear is I have loved and eaten this bad stuff for so long which means I could have been spiking every single day, which in my opinion means my PN could definately be from diabetes.

Today has been almost an ALL protein day, yet my numbers are still 111, 115, 101 today, which is NOT comfortable for me on a day when all i have only eaten protein.

Anyway, once again, Im sorry to make this about me, dont mean to steal your post!!!!!

Your A1C sure looks good! I have yet to do that test.

And my B12 came high because I didnt know I needed to stop taking all my B's before testing. That number scared me, but Im still taking B12

[echoes long ago]

flying squirrel blood tests for MMA, homocysteine and b12 will not tell you at this point wether you were deficient before you started taking b12. i would keep taking it and see if it continues to help you.

on another point why are you doing a nerve biopsy? that is usually done as a last resort these days and only if certain causes such as vasculitis, are suspected. it causes permanent nerve damage and numbness and can result in permanent pain. check out www.lizajane.com to get an idea about testing for your type of PN.

[FlyingSquirrel]

Echoes--they said they wanted to check for amyloidosis. I asked about permanent damage or pain, seems a reasonable assumption, since they're slicing up a nerve. They said the never had and residual problems in the past.

Thanks for the link...this spreadsheet is priceless!

[FlyingSquirrel]

echoes- I googled nerve biopsy and pain. All I'm finding is reports of permanent numbness, which I already have, as well as pain, but I don't need anymore. Can you point me in the right direction?