The NIH and American Dietician Association,
 

have both endorsed B12 oral supplements for all persons over 50...just in case.

It is cheap, and harmless-- and may help many people who are not
absorbing from food properly.

Many doctors know nothing of nutrition. Ask about Vit D next time, and get another blank look!

Wow, shame on them. To tell me "I don't believe in this vitamin stuff, I'm from the old school", is the same as telling me "I still watch Black and White tv and I won't go near a computer (he probably doesn't), He is however an excellent surgeon and doctor. Too bad he is OLD SCHOOL when it comes to supplements.

So I'll take my B-12 methyl, stick my face in the sun for a short time every day, and take care of Alan's foot.

I just wish I could go back in time when I was first diagnosed with diabetes and told "Watch your glucose number, you don't want complications, later on".

Yeah, I should have listened, shouldn't I !!!!!!!

Thanks for all the good info Mrs. D!!!

I just hope the burning quiets down.

Melody

Ask about vitamin D? Mrs D?
 

Love that comment! You are soo right. When seeing my newest doc an Endocrinologist, he suggested even MORE calcium, & D. Thanks to you I was able to say "Calc. Citrate rather than Carbonate....and also Magnesium?" Thanks to you, I think I got an actual look of respect from him.

Melody, I meant no disrespect to either you or Dr Fred. You are very lucky to have him. It's just that docs couldn't possibly keep up to date on everything and still practice....it's impossible! It's just that all my docs have some foibles, and one is the vitamin/supplement black hole. Depending on what's vogue in their training they have to miss other aspects or developments since that point in time. An example I've one doc who orders one particular type of blood panels that's no longer used- Soo the labs do another set of tests that have most of the things he's looking for, but not all. In the last two weeks I've had two other docs order the same tests but using the right codes....It's a good thing I've been trying to get all my bloodwork done at one place at one time and not have scars all over my arms where I have to get those IV lines in. This way too, I can be sure that all my docs are getting all my reports. I'd much rather be herding cats?

I'm very relieved that Alan's foot is healing well. A friend of mine spent 3 weeks in the hospital two months ago for infected diabetic foot issues. He was NOT a very happy camper.

So for now, :hug: :hug: !!! - j

Dahlek:

Not to worry, you didn't dis-respect anybody. The good thing about Dr. Fred is that the special tests he orders are from Athena Labs and not just Quest diagnostics. That, to me, is a sign of a progressive doctor. At least he is not stuck in the old days (LIKE SOME DOCS ARE)!!!

Dr. Fred went to medical school in Italy!!! He speaks fluent italian, english and I thing he is yugoslavian. I'm not sure!!!

He's built like Arnold Swartznegger and he's charming to boot.

And he's a very good doc so we are very lucky. And his staff is knowledgeable (I love the guy Frank there who knows lots of stuff) and when I got there he even asked about Alan.

So let's all of us pray that some day they find a CURE for neuropathy.

And, believe me, when I get my B-12 LEVEL, I will surely post it.

It's supposed to be at least over 400 right???

Melody

Athena Labs and....
 

Melody,

Sounds like Dr. Fred is a good guy.... and even being out here on the West Coast my doctors use Athena when necessary because its the only place the tests are available in the country because Athena helps develope them and can only be got there.... however, after they become routine, at least out here, Quest is considered quite reliable and insurance will not pay often out of state for a test that can be done locally - or - if you are going to a center for special tests like biopsies for amyloid, sural nerve, etc... they are sent to the centers the docs feel are the best to analyze.... (example - my sural nerve was taken out at local hospital and sent to large medical school for analysis - and amyloid biopsy sent to Boston at my request for second opinion)......

However, also agree with Dahlek that docs cannot possibly know all - and thats why we have our groups and us to help educate them.... as I know you do ---- even my neuros have worked off the LJ spreadsheets to be sure all testing has been done and may have missed - but they are incredibly busy and I can see how they dont have time to know all - most of my docs I have now are heads of their departments at their hopsital - and are called constantly on traumas, etc ... these guys/girls work like crazy and I dont know how they do it... they have told me - if I do have anything relevant for them - give them copies to read and they will.... which is great.....

Anyway, most important thing is we work with them - as members of NT we have lots of resources and thats great!

Good to hear Alan is healing - and sorry your PN is getting worse - gotta be tough - I've heard about 60% of people with diabetes eventually get PN - but at least knowing the underlying cause you are way ahead of the game - and keeping your diet etc under control like you have been you probably have really been helping yourself.... hope you find relief for the buring and take care.....

Hi Kmeb: How are you doing???

Oh, I'll live. I have to. Don't know what else to do. I take my b-12 methyl and say to myself. "It's going to your nerves and it's repairing them". I say this to myself right before I go to sleep. I do this every night. I think it's called Imaging!!!! If I believe it's going to happen, PERHAPS??????

Want to know what I think is happening with these doctors?? There are two many of US and too few of them. And with the paperwork, the insurance claims, etc. etc. sometimes it can get to be an assembly line. As we age, we get more STUFF, and if we are diabetic, and we don't do what we are supposed to do, well....eventually we get neuropathy. It's just in the cards for most of us. I was stupid. I didn't follow doctor's orders all those years ago. I ate dumb stuff, didn't exercise, and was in complete denial. I really thought I was immortal. How dumb is that? So now, I just pray and watch every single thing that goes into my mouth. Too bad I had to be 59 to do this. Oh well.

Anyway, I do hope you are feeling up to snuff, as we say!!!

All the best. Melody

P.S. Anybody here watch American Idol and Dancing with the Stars???
It sure takes my mind off of neuropathy!!!

Melody since you have been taking b12 the blood test is going to show a high level in your blood, maybe even 1200. You wont be able to tell what it was before you started taking b12. If its still low even after taking it for a while it shows that you had a serious absorption problem.

Joe, I've only been on this for 1 week. If my b-12 level could change in a week and get up to 1200, well, THIS WOULD EXPLAIN WHAT'S HAPPENING TO ME RIGHT NOW!!!!!

This morning, I got up at 7:45 a.m., took a walk to Dunkin Donuts and had breakfast, then I went to the drugstore to buy Alan's Betadyne, gauze bandages, etc, then I went shopping, then I came home, got into the bathtub with a Brillo Pad and cleaned the whole tub. Then I washed the whole bathroom. Then I got out my mop and cleaned the whole house. Then I cleaned my bedroom.

Then I took a power walk (with my ipod).and walked to the place where they add minutes to my cell phone (prepaid), then I went to the supermarket and bought some stuff to cook for dinner. As I'm walking up and down the aisles, I'm listening to the Rolling Stones singing Gimme Shelter and I'm practically dancing down the aisle (in my earlier days, I was a dancer, disco etc. etc. ). Even with arthritis (but before I developed neuropathy, if I went to a wedding, I could keep up with the 20 year olds on the dance floor).

I just came home. I'm not even breathing hard. When I finish typing this, I'll go into the kitchen and start cooking my chickens.

I have NEVER IN ALL MY LIFE HAD SUCH ENERGY. Now if this is what happens when you take B-12 methyl (about 4000) a day, well then BRING IT ON!!!!

I told my girlfriend who is 55 years old (I told her this when I first got the stuff) and she's been on it for 4 days now. She calls me up last night and said "Melody, I don't know what's in this B-12 stuff but I shopped all day and I'm not even tired" And she works 2 jobs.

So when they say that B-12 gives you energy, they are not just whistling dixie, are they?

And I won't go off this stuff just to see what my b-12 level is on a future blood test.

Tomorrow I go to Cornell Medical Center for my diabetes protocol check-up.
I'll probably dance into the examination room. LOL.

you see, I already broke their protocol by lowering my AIC level, losing all the weight I lost and lowering my blood pressure. They said not too many people achieved the results I achieved. It's no miracle, believe me, And this was WAY BEFORE I started Methyl B-12. This was almost 2 years ago when I first went there and my sugar was 400. I was morbidly obese and something clicked. I went to a nutritionist and the rest is history. I had a food addiction all my life. But something clicked in my brain.

But now that my neuropathy had erupted in full bloom (for about a month now),well, honestly, I didn't expect this to happen but happen it did. So now I am extremely determined to give it my best shot and at least reduce my symptoms.

I hope that my power walking, my eating right, and my taking my methyl b-12 supplements, well, I at least hope that I benefit my body IN SOME WAY.

I'm thinking positive here. No other way to go.

I should get my b-12 level on Monday. Will update.

Melody

So you used to twirl around at 2001 Odyssey haha......for those non new yorkers here that is the disco where Saturday NIght Fever was filmed......the building was demolished in 2005....anyway since you caught your PN very early like Brian did maybe you will have the same result he has. Good luck , I hope you are one of the success stories here.

Ok
 

Please just tell me you guys still dont have your disco "outfits" ok?:eek:

errors on B-12 testing
 

Melody

Heyjoe is correct that your serum levels will be affected by taking vitamins. I think, but am not sure, that folate and folic acid also mask a B-12 deficiency...not just additional B-12. I can't remember, but I read up on that a while ago. The lab people don't ask and the docs frequently don't realize that either. I would ask before you have them take the blood, because you might be wasting blood and money...and none of us want to do that.

C

For others who may be reading here about B12
 

Hooray for you and your friend, Melody!

Others: please realize that the response they have apparently had is not typical. No responding that way does not mean you don't need B12 and it isn't helping.

rose

Regarding B12 testing and folic acid masking deficiency
 

Yes, the test will measure lots of B12 running around in your blood that will never be stored or used. But it will likely show that B12 is being absorbed, and that is a very good thing. Keep it up, because it takes time to replenish stores of B12 to a healthy level.

Getting folic acid through supplements or fortified foods is one of the reasons a person deficient in B12 may not show signs of anemia. And, unfortunately, a large percentage of medical people think that lack of anemia rules out B12 deficiency :eek: .

rose

Hey Cyclops:

I already took the test. I don't pay for it, and all visits to my primary care guy have no co-pays. So they can take all the blood they want.

All I know is one thing. Since I've been taking B-12 methyl, I have A LOT more energy. So that's a good thing.

The thing with my feet (lately) is that it comes and goes. Depends on the weather (if it's going to rain, I have burning, then when the rain falls, it stops). I absolutely don't understand this at all. Does this mean, I should move to England where it rains all the time?????? I would if I could, believe me. But it usually flares up when I sit at the computer or sit anyplace.

If I walk, my feet just slightly buzz. But if I sit for any length of time, they burn.

Very confusing.

Melody

P.S. No, I never went to 2001 Odyssey (isn't that where they filmed Saturday night fever???), Ah, for the old days when we did the Hustle and the Saturday night fever line dancing. I can still remember the steps. We used to go to Strattons and Lakeville Manor. I will never understand why we had to leave the house at 12 midnight to arrive there at One a.m. I would ask my friends. Why can't we leave t 7 p.m. and get there at 8 p.m. and then go home at 1 a.m.??? They would look at me and sigh, like "she's crazy"!!

I mean, who on earth goes out at 12 midnight and gets to a place at 1 a.m. It never made any sense to me but that's what me and the other girls did on friday nights and Saturday nights. Then we would all line up on one side of the room while the guys would just mosey on by and "select" some girl to go up to and buy her a drink. Now I DON'T DRINK AND NEVER HAD!!! So I drank TAB all night long. You should have seen some of the polyester outfits we wore. I could die laughing thinking about it. And Donna Summer and McAuthor Park, oh yeah, I could go back in time. I wish there was a time machine.

of course i dont wear a polyester shirt or leisure suit, it would clash with my flowered shirt or Nehru jacket.

I also have much more pain and stiffness in my feet when I am sitting for more than a very short period of time and then stand up. I hobble around for a while after I stand up even on the best of days.

Joe: Read my P.S. that I put on my post.

Oh, I had a Nehru Jacket once. I went to the Fillmore East and saw Santana.
God, those were the days. I will never forget. I was 22 years old and I went with my girlfriend Loretta to the Fillmore East. My girlfriend jumped up on the chair and she's moving this way and that way. I never saw her do that either. Then she says out loud!!!

THIS IS BETTER THAN SEX!!! I almost choked on my diet soda.

I didn't even know she knew what sex was. I sure didn't at 22. I laughed so hard. I'm a 'LATE BLOOMER" as one would say. But I bloomed.


I also remember being at the Fillmore to see James Taylor, and everybody was drinking Apple Wine and they passed joints around I will never forget this as long as I live. Now I was an old fuddy duddy when I was 22. I didn't do ANYTHING.

So down the rows, they are passing joints and the guy next to me calmly hands me a joint. I just passed it to Loretta, and she didn't do pot either, she simply passed it to the guy next to her. Everybody in the whole place was getting stoned.

AND NOBODY DID ANYTHING ABOUT IT!!! Here we were, a few thousand kids at the Fillmore, and all the police were a the right side of the building just watching us and watching the joints go round and round and no one got arrested. I remember asking my friend "isn't pot illegal???" She just shrugged.

Those were the days!!!
mel

Rose:

You said this: "But it will likely show that B12 is being absorbed, and that is a very good thing."

How will it show that B-12 is being absorbed???

Thanks, Mel

Your reaction tot he major dosing of B12, Mel, is not all that uncommon--
 

--B12's effecton flagging energy levels has been known about for over a century. In fact, the first line of defense for sagging "pep", as they used to say in the 50's, was a B12 shot, and many mid-20th century doctors gave them for just that reason. (I also suspect that they gave them quite often to women they suspected of being "vaguely depressed". Of course, if you lived like most women in this country did in the 50's--even in higher socioeconomic strata--you'd be depressed, too.)

I think my taking of methylcobalamin (though I never took quite as much as that--my max was 2500mcg/day) has helped me to combat the sluggishness that gabapentin (Neurontin) tends to foster (though it hasn't stopped the carb-craving weight gain gabapentin also can cause--in fact, it may have eaxcerbated it, as most of the b-vitamins are good appetite stimulants!).

Hey, if it's giving you more energy to that extent, you may well have not had optimal levels, even if you would have had no symptoms from it. That serum B12 reference range of 200-1100 is just flat outdated--even the Japanese/European reference range of 500-1300 may be too low. I think an optimum "cell-bathing" range would be at least 4 digits.

My last B12 level was 1864. I had taken my supplement a few hours before, so I may have had an exaggerated reading. My neuro, though, knows all about what I do, so he just smiled.

Hmmm...
 

I think I am seeing a common thread here. Maybe all of this dancing and hanging around in discos we all did way back when causes PN, when your feet finally say, "that's enough"... :) And how about those 3 inch heels we used to stumble around in? Think those could have part in PN? I know you guys probably didn't have any of those, but I bet I am not the only one on here who wobbled around in those spikes....

I fell off of my shoes in the front yard some time back, in shoes with a normal size wedge-heel no less... Fractured ribs... Ouch!!!

And from tennis shoes? Plantar Fasciatis...

Now that I think about it, maybe I should go back to the spikes... At least I knew why my feet were hurting then... :)

Cathie

Personally, I think those heels are barbaric--
 

--whether one has neuropathy or not.

I don't know to what extent they may have contributed to anybody's neuropathy, except the compessive kinds, but they sure can cause a whole host of foot, leg, and back problems.

Why people choose to put appearance (the whole long-looking leg thing) or fashion ahead of comfort has always been a mystery to me. The good thing, perhaps, is that those of us with neuropathy are sort of FORCED into wearing comfortable shoes/clothes--there's something about that kind of pain that'll make you forget about fashion really quickly.

Uhhh
 

:D I do,ya just never know now do you. Those were fun times,there
was a lot of therapuical Med, ha going around than,never saw anyone
get arrested firgured the police were standing there getting a contact
high,hmm somebody told me that ii wouldn't know. :D

Mel i'v been a Diabect for 41 yrs. When i was 19 and in nursing school
in Mi. i was running down the hall and blammm i Thought i was having
a stroke,i couldn't talk,started sweating and wanted my mommie in a big
way..They sent me by ambulance to the hospital,i couldn't talk,could'nt
hear, eyes were blurry,Oh i was a mess. When i got there my husband
was waiting there,oh i thought this will be the last time i'll ever see him
again. Wait a min. i'm a 19 year old 100 lb wonder with a gorgeous husband.

And how did that IV get in my arm,who put this in my arm i demanded!!:mad: Oh boy i feel better,grab my husband's hand I'm
fine take me back to school..I hear a deep voice,you want to be a nurse
and you have no interest in what just happened to you?? Me,yes but my,
aww he wasn't going to belive me..Do you relialize you have a very high
sugar level (no stroke) well ok no i didn't!!Well your being admitted right now,
Noo school you will learn here for now,and i'm going to help you live.
Back in those days they didn't get your surgar level down,tell you to see
you family Dr.

They did a no food all night next morning,give you a big cup of what tasted
like orange sugar swallow it,i'm trying swallow it (did anybody call mommie)
There got it down,big deal yuck.Than began 6 hr. glucose tollerance test..
Well this isn't bad,nurse comes back in wow finally going to get food,as she
saids time to get blood ouch,how do you feel great,than not great,awfull,
the whole time she's taking blood and i'm thinking i could teach dance forget
nursing..Oh it's all over want to sleep no now you eat,she left the room
tell my husband you eat it,while he shoves it done my throat then sleep.
Dr. comes in explains everything i thought about diabetes,i was shocked.
There none of that in my family( Dr.do know you remember insulin as been
only used since 1920,people died young. Well not my people Dr. My husband
sigh!! he did that for years..Before you left the hospital you learned,there
were no metor'ss back then,but you learned till you got it right given a orange
insulin made me throw up..Than the Dr. comes in read those books ,yes sir,
he picked 1 up opened it asked a question,i answered it.Good,now Sue you
are a diabetic will always be one and there ways to control it but you
must control it.

I did by a diabetic diet,i took it very serious,my husband went on it my children. I totally credit the Dr.but even more the diatetian's who over the
years helped me..8 yrs. ago when my husband passed away,my drug of
choice was food,i ate my way up to 200 lbs my kids said please stop Mom.
i was getting sicker and sicker by the time i stopped,almost 3 yrs. although
i was put on oral insulin,did not loose weight right away,last year went out for
dinner in dibectic shoe's and socks came home 3 hrs. later tried to take off
my sock couldn't.Got Bob and girlfriend to get me to the hospital.They had to
knock me out to get that sock off..Oh forgot i was in a wheelchair by
then my PN and weight and what ever..I spent 6 weeks in the hospital,
almost lost my foot,got a staff infection,lost 30 lbs, had to have my foot grafted,poor Bob was afraid to go home. Alll my children walked in from out
of town and they cried.So now i'm 90 lbs.lighter i mostly walk on a walker.

Did i know i was getting PN before my husband died yes,i was feeling the pins
burning,so forth..Oh why did my husband stay on that diet with me for all
years,a lot of people had Diabetes in his family. For 5 yrs.after he died i did to.For the next 3 yrs.got all studies done here and then again at Mayo!!
13 yrs.before i found out i had Sogren's Syndrum,who knows..As you know and
I know PN is going to hit dancers, runners.rock climbers..Do i just blame the
Diabetes yes but remember i have polyneuropathys.My sugar stays always
around 90 and i can touch my toes if someone it there to catch me.PN can
mess up your balance,it's in my feet,calfs,hands up to elbow across my back.
Was to many years of being a nurse,i don't know.I also have a tumor on the
adrenaline gland above my kidney,they can mess with you.But when you get
right down to it,for now and unstill some genius comes up with something .

We just do or best you power walk i dance with my walker,Bob dates 4 women..And oh SHOOT my daughter still hasn't had that grandbaby of
mine,do midwife's get paid by the hour,2 days late and counting.
And i never judge any meds. people take as long as there controlled by Dr's.
dalek is right we all deserve just a moment of pain free. That's enough Sue

What can I say...
 

All I can think of is I was young and stupid then. You know how we were then, always wanting to look soooo cute for all of you hunky guys... Actually, I wouldn't wear another pair of those shoes if you paid me... If I can fracture ribs in fairly normal-heeled shoes, imagine what I could do in those things.

Someone came to visit me not very long ago wearing a pair of those needled-pointed heels... I wanted to scream when she walked on my beautiful hardwood floors... But.... she sure did look cute!

Cathie

Oh your
 

Pretty floors there hard to keep up but i love mine..I never have the guts
to tell Bob's girls take those beautifull shoes off. So i told Bob too!!! It's
kind of funny to watch there faces.

I remember going around with my feet screaming,but i was hot. :) Now i'm
really hot in shoes that i hope won't touch any part of my feet.
Cathie we are having some floods but it looks awfull in Dallas,don't go
out in that you will catch something scary :eek: :hug: Everyone Sue

I have never in all my life worn 3 inch heels. I'm fairly tall, almost 5'7 but everybody (for some unknown reason), thinks I'm 5'8. Maybe I appear taller.
If I ever put heels on (even when I was younger), I would feel like I was in the stratosphere. I always chose shoes with little heels.

Then I discovered sneakers. Thank the lord for sneakers.

And my diabetic shoes will be ready soon (I get them through my insurance).

So I shall be happily hopping around in my diabetic shoes.

Been using the Freez It - Darn thing helps me.

But I will still take my methyl b-12. I think that just might be the ticket (in my case).

will update. Melody