[KarenEVP]

I went for my second opinion - I waited a month to get in to see this neurologist, Doctor C.

He looked through all of the reports I had from Doctor A (first neurologist), results of the - what do you call it - nerve conduction test?, etc...

But when I went in for my apt., mostly what I had to tell Doc C was that I found a site on the internet where ppl are real knowledgeable (Mrs. D, Wings, and some others I've mentioned before) and that I took thier advice - (biggest being Vitamin D 5000 iu per day to solve deficiency and Benfotiamine to solve the parathesia -whole body itching and pricks)... and that when the leg cramps let up and the itching stopped - that tears of joy were welling up in my eyes from the relief of it all ...

After my whole story - he said the results of my test are so borderline that he doubts I even have peripheral neuropathy - but stated that he would not have ruled out MS so quickly and would have wanted a brain - oh what do you call it... MRI. (this as you can imagine did not make me feel all warm and fuzzy)

Then Doc C ordered additional tests... to re check Vitamin D level now and some other vitamins - he was interested in B12 he mentioned - just in case it is pn from vitamin deficiencies... plus a fasting glucose level ... and then he told me he'd call me with the result and recommendations... and to share the results of the test with Doc A.
(The only thing Doc A had said about vitamins at all was take B6 100mg daily, period.)

It seemed to me like Doc C had great respect for my first doc and didn't want to step on his toes, especially since I was feeling better - but I explained - But Google helped me more than Doctor A did! (Because for a while, I just kept going to the computer, not even knowing what I was going to search for ... until I stumbled into here, eventually)

But then he said, if I get into more problems, I can just schedule another apt. with him if I want to. So that is where it was left.

To be fair- I hadn't showed the first doc, Doc A as much lab work as I showed the second Doc, Doc C - but only because I didn't know that vitamins and such mattered yet... (cause I had not been here yet and become educated) but then again, Doc A did not bother to check for any vitamin shortages either so....

Doc C also made a comment I want to share with you guys... "I see you figured a lot of it out by yourself." Well, actually I didn't, you guys already did - but Doc C shares agreement with what you think I can tell whereas I'm not sure Doc A does.

Seek and ye shall find (not a religious person, but I like this one)

Doc C also mentioned - Gee you're kinda' young for pn (49) but it's possible you just got unlucky (to the effect of) ..
He also said I was a lovely patient to see - and I'm thinking to myself, that's because I'm in here with good news and not in creepy pain, itching and in a complete panic anymore LOL... Thanks to HERE.

I told Doc C - I'm not sayin' it's 'gone.' I still have a cramp here, a tingle there, brief light burning here and there on occassion - but my leg is no longer weak when I use it a lot - that scary problem is 100% GONE. I can work out 85% of the time as long as I want now without feeling like I have to worry that Im overworking my leg(s). When I go to bed at night, foot tingling is either absent or nearly down to nothing... Dang - maybe I should put up my tips 'cause I did find out a couple on my own.... I no longer have a "ball and chain' leg to drag around, that is 100% GONE. So, no, it's not gone, I am still more tired at night than I used to be ... but I am sooooooo much better.

[KarenEVP]

so, here's the test order which I can't understand much of, but thought I'd post - I just cut my name off of it...

[mrsD]

That is a typical order. ANA is for lupus or other autoimmune
things.
It is a "fasting" order.

If you were taking your B12 when the test was run it will be
elevated. It is best to stop vitamins for about 7 days before tests, or the results will be falsely elevated.

[KarenEVP]

Oh!

I can't stop the Vitamin D though - I can't get by without that, or the Benfotiamine - or I will be disabled by full body itching - a registered nurse friend of mine were discussing last night - the history, before Vit D and Benf. and she said, "you were really getting debilitated by it..."

[KarenEVP]

Posting up notes for those who might follow behind me...

Here's where I got the Vitamin D info and help - big star by this one...
http://neurotalk.psychcentral.com/thread185198.html

Here's where I got the help to stop the Parathesia - whole body pricking and itching...
http://neurotalk.psychcentral.com/thread185562.html

On my own, Googling, I found out that Coconut oil I had been taking for a LONG time for my knee arthritis and before that, heel spurs... was all of a sudden increasing pn foot tingling, even bringing on some burning and bringing on bouts of parathesia... I cut that out and then I cut out the fish oil I had also been taking forever... (for arthritis and increase in mood/wellbeing) and the flaxseed (raw and oil -I had been taking for menopause but found out worked great for arthritis too).

At that point, I was just on Vitamins, Vitamin D being the most important then the Benfiotamine to stop the itching.

I kept trying to re-introduce the flaxseed (raw and oil) and the fish oil on the advice of Wings 42 although now I can't find his thread - thought it was under a sticky; PN Does Get Better.....but I can't find it now... other's advise them as well anyway... After a bit of trying, I am now able to take as much flaxseed raw and oil as I want without an increase in symptoms and one 1360mg(300mg omega 3-Puritan's Pride) fish oil capsule (equivalent to three Walmart brand fish oil capsules) a day without much increase in symptoms.

So... here's what I'm taking:

Flaxseeds - 2 tablespoons. I soak them in a bit water then crunch them like nuts, thoughout the day, I'm addicted to them now.

(At least) 2 Flaxseed oil capsules / spring Valley 1000mg

Advised by Orthopedic Doc who also had pn:
B Complex (Super B Energy Complex, Nature Made A 790IU, B6 2mg, Folic Acid 400 mcg, B12 6mcg, Biotin 300mcg)
CoQ10 200mg
For Athritis he also advised fish oil and
Glucosamine 1500mg

First Neurologist, Doc A
B6 100mg

Mrs. D
She said D3 4000iu
But I've been doing 5000iu, it's getting retested next week anyhow...

Benfotiamine 250mg - From Stacy, stopped the parathesia

I was taking more, but I pared it back to what I 'thought' was most important, and that's my list at this point in time. Hope this helps somebody else...

I am also, per Wings 42, eating mostly vegitables and easy to digest meats like salmon/chicken breast - I am avoiding all the heavy, fatty meats that everyone knows they shouldn't have. I have lost weight, ppl are amazed at my weight loss recently.

I had to quit smoking. Now I have an electronic cigarette with a no nicoteine carterage to keep me from loosing my mind. Others smoke around me and I still take a puff of a real cig couple of times a day, without inhaling, to keep from going nuts. Inhaling a real cig now just makes my leg ache, within about 5 seconds.

[mrsD]

It is the B12 mostly that will show up.

The Vit D I believe is removed from the serum very quickly.

The Vit D from the sun does not show up in testing either, as a false
high.