[MelodyL]

Originally Posted by JoanB

Hey mrsD, you said this:



And MelodyL (the overachiever ) says that hers is 2000.

I'm not clear on exactly what number we're shooting for on the B12 level. When I first started my search for PN answers, I tested at +800 without supplementation. So is it correct to think that lack of B12 is not a contributing factor to my PN cause in my case? And if it's not, can getting my B12 higher still help?

Sorry if you've already gone over this...if I missed it, you can give me some study hall detentions if you want.

Hi. Just wanted to add my two cents.

I went on Methyl B-12 because I had gone to my podiatrist and he used some vibrating gadget on my toes after he cut the nails.

Well!!!!! I actually almost kicked that man. My toes were vibrating like CRAZY!!

And he was going : 'Good , good, you have feeling, that's good"

I'm looking at him like he was crazy. I said 'what on earth are you babbling about, you did this to me, are you nuts, my feet are TINGLING."

He then said "yeah, but you have FEELING".

Let me tell you, I NEVER WANT THAT FEELING EVER AGAIN. It lasted all day. I immediately went to the store to buy Methyl B-12 (because I knew all about it from going on these boards).

Couldn't find it anywhere. And any doctor I told this too, completely pooh poohed my taking Methyl B-12.

I finally went online and began taking it. And the funny thing, is a few days later I dropped a bottle of soda on my foot AND THE BUZZING almost drove me nuts.

I said "this is what Alan lives with???"

As soon as the Methyl B-12 came (I had initally bought the 1000) At least this is what I remember. And I began taking it . I knew within a week that I had to up the dose.

The results were amazing.

Now I already knew I had (what the docs at Cornell told me ), the beginning of neuropathy in the tips of my toes. No pain, no nothing, just a bit numb when theydid the filament test on the tips of my toes when I was in the Accord diabetes protocol at Cornell.

So flash forward a while and the podiatrist is using this tool and I jump out of the chair. (I will never forget this as long as I live).

So I've been on Methyl B-12 for about 2 years now. Could even be more. I have no idea. I don't care either.

I have complete feeling in my feet, and even better, when the podiatrist does my feet, I let him use that vibrating tool and I didn't jump out of the chair. Yeah, it tickled but I could stand it.

So my nerves on not HYPER SENSITIVE.

Thank god for Methyl B-12, Rose, and our lovely Mrs. D.

And right now, here in Brooklyn, NY, we are probably going to be having a hurricane because the wind outside is blowing everything into my window and around my kitchen.

This is happening in MAY??
lol

Melody

[JoanB]

Thanks to mrsD and Melody...I have been taking B12 half-heartedly, but it's the cyco-whatchamahoozits because I bought a big jar before I knew the difference. I've mostly been focused on the vitamin D because I did test low on that. But you've convinced me--will get some methyl tomorrow.

And put some rocks in your pockets Mel...it's been blowing like the devil here in Pittsburgh since the wee hours this morning and still is as I type, so you'll probably be getting it until tomorrow morning at least.

[MelodyL]

Originally Posted by JoanB

Thanks to mrsD and Melody...I have been taking B12 half-heartedly, but it's the cyco-whatchamahoozits because I bought a big jar before I knew the difference. I've mostly been focused on the vitamin D because I did test low on that. But you've convinced me--will get some methyl tomorrow.

And put some rocks in your pockets Mel...it's been blowing like the devil here in Pittsburgh since the wee hours this morning and still is as I type, so you'll probably be getting it until tomorrow morning at least.

Rocks in my pockets IT IS!!

I'll bet I'll get blown down the block tomorrow morning when I go out for my usual Dunkin run.

lol
mel

[darlindeb25]

Yeah, it's really windy out here on the island too. I wish the pollen would all blow away!!! They are promising winds of 25-30 mph with gusts up to 40.

Joan, it is true that methycobalamin is best, but some people do well on cynacobalamin too. I wouldn't toss it, well, with money as tight as it is, I wouldn't.

I take 5000mcg of Jarrow Methycobalamin, have for about 3 yrs I think. My B12 level was 1700 in Jan and my neuro told me to stay with this dose.

I finally figured out that I am super sensitive and had been getting glutened by foods I trusted to be GF simply because they were labeled as so. Now that I have stopped eating any processed foods I am finally losing weight. So come June when I see my neuro again, I am hoping my vitamin numbers are going up where they belong now..we will see.

[JoanB]

Originally Posted by darlindeb25

Joan, it is true that methycobalamin is best, but some people do well on cynacobalamin too. I wouldn't toss it, well, with money as tight as it is, I wouldn't.

I take 5000mcg of Jarrow Methycobalamin, have for about 3 yrs I think. My B12 level was 1700 in Jan and my neuro told me to stay with this dose.

Booyah! Count me in the B12 club!

I finally figured out that I am super sensitive and had been getting glutened by foods I trusted to be GF simply because they were labeled as so. .

Deb, you invented a new verb: glutened! At least I think it's new. I like it!

Now that I have stopped eating any processed foods I am finally losing weight. So come June when I see my neuro again, I am hoping my vitamin numbers are going up where they belong now..we will see.

My problem is that ever since I started losing weight for no reason about a year ago, I can get away with eating any old $#!+ that I want without Mr. Scale punishing me. I have to get back to the way I used to before I became one of those people I always hated.

[echoes long ago]

Originally Posted by JoanB

Hey mrsD, you said this:



And MelodyL (the overachiever ) says that hers is 2000.

I'm not clear on exactly what number we're shooting for on the B12 level. When I first started my search for PN answers, I tested at +800 without supplementation. So is it correct to think that lack of B12 is not a contributing factor to my PN cause in my case? And if it's not, can getting my B12 higher still help?

Sorry if you've already gone over this...if I missed it, you can give me some study hall detentions if you want.

Rose used to say that the amount that shows up in your blood test is not the same as what you are actually absorbing into your tissues, so from what i have gathered it wouldnt hurt to give it a go for a while and see if it helps. Besides we are all very different and what may be enough for me may not be enough for you depending on how much damage needs to be repaired.

[darlindeb25]

Deb, you invented a new verb: glutened! At least I think it's new. I like it!

Well, it's not a new verb, it's one we celiac's use all the time. When we eat gluten, it's poison to us, but we call it being "glutened"! It definitely is not a fun verb!!!

[fabdou]

Mrs. D, my daughter has been diagnosed with New Daily Persistent Headache. We have tried many meds without effect. Are you aware of any vitamin deficiencies that could contribute to this problem or of any vitamins or supplements that might be effective in treating this terrible headache

[mrsD]

No I am sorry fabdou....

Treatment of persistent headache is a specialty and should be diagnosed carefully to rule out pressure changes in the CNS fluid of the head.

People with chronic pain in general are showing up low in Vit D tests. So you could have that done, as well as B12 and B6 at the same time. Vit D should be 50-80ng and B12 should be 400 or above. (doctors still use antiquated ranges and tell patients they are "normal", when in fact they are really LOW-- so keep this in mind and get your results).

Some things in the past that have been suggested are feverfew extract and riboflavin Vit B2. It wouldn't hurt to try these if you haven't already. Magnesium treatment does help some patients with migraine. I have a magnesium thread here:
http://neurotalk.psychcentral.com/thread1138.html

I'd consider a food intolerance too. Gluten and dairy are the biggest factors in neurological illnesses.

[4aulkner]

Originally Posted by echoes long ago

Rose used to say that the amount that shows up in your blood test is not the same as what you are actually absorbing into your tissues, so from what i have gathered it wouldnt hurt to give it a go for a while and see if it helps. Besides we are all very different and what may be enough for me may not be enough for you depending on how much damage needs to be repaired.

So right! I've just had bloodwork done and all my B numbers were fine. At the same time, I had some kind of urine testing (you know - fill all the little vials and send them off in a freezer box to, in this case, Genova Diagnostics) and my vitamin B levels were awful. Evidently what's in my blood isn't doing much for my tissues -- or my body. (What? It's just hanging around? Skating on by? The nerve!) My naturopath is trebling my doses of several things. Cannot wait to feel better!!

What I wish someone could explain to me is how the lack can show up in urine and not in blood testing. . .

Marcia