Uh, Dahlek:


First, let me clear up some stuff. I AM THE DIABETIC IN THE HOUSE. Alan never had diabetes. And now I have diabetic neuropathy. Alan has had idiopathic for 18 years but took a spinal test and they found protein, and that qualified him for the ivig. He has never had any diabetes, pre-diabetes, or anything like that.
And no one in his family has had diabetes. Now my grandmother and my father got diabetes late in their life.

Now back to Dr. Fred.
Why on earth would I drop Dr. Fred. He's the best primary care doctor I've ever seen.

And I do have an Endo. I am in the Diabetic Protocol of Cornell Weill Medical Center in NYC. Can't get any better than that. They got my sugar down to 116 from 400. We have both been to a nutritionist. That' how we lost all of our weight.

You ask when Dr. Fred got his degree. Well, while I don't know when he got his degree, he's only 39 years old and he loves to talk about supplements and the newest stuff. He also loves Alan's Dr. Theirl. He's a big believer in chiro/neurologists.

I mean, where can you go, that you show up on a Wednesday, tell them what blood tests you want done, then you go there the next week and the Doctor talks over everything with you??? I have never had that experience.

Usually, you make an appointment, go to the doctor, he orders the blood tests, then you go to a place, get the blood drawn, then you make ANOTHER appointment and then you see your primary care guy.

This is not what I'm doing. I'm having my blood work done tomorrow at 9 a.m. All I have to do is tell Frank (the male nurse) who's in charge of blood work at Dr. Fred's office), I just tell him "run all the usual tests, plus I want a thyroid work-up and a B-12 level. Then he writes it down, the nurse comes and takes the blood, they send it off, I go there maybe Monday or Tuesday of next week during normal business hours and I'll see Dr. Fred.

Again, why do you think I would want to drop Dr. Fred?
Do you think that's who answered my question about the methyl?? No, it was the podiatrist who saw Alan yesterday, not Dr. Fred.....

lol
Melody

P.S. As soon as I run home from the blood tests, we go back to the podiatrist and see if the hold in Alan's foot got better or if he has to go into the hospital. And since he has an upcoming IVIG home thing next week. I'll have to tell the ivig people if it's a go or if we have to reschedule.
All I do is make appointments, re-schedule stuff, and take care of him. I have to start taking care of my own neuropathy.
At least I started with the methyl.

Cathie:

I'm with you on the B-12 thing and I completely agree that doctors should be much more informed than they are on B-12 and supplements.

Now Dr. Theirl, well, he's a whiz kid on supplements and vitamins. Believes wholeheartedly in them.

KNow why I like Dr. Fred? Because he listens. He just doesn't pooh-pooh things. He always makes you feel like you matter, your thinking process matters. I will never forget when Alan started going (way before he became MY doctor).

We were there for his first visit (because you have to pick a primary care doctor when you are on a medicare HMO) and I forget why he picked Dr. Fred, but there we were and he had Alan on the table, and he's giving him an exam and he gets to his feet and he asked Alan, "tell me about your neuropathy". Alan says "listen to Melody, she knows all about my neuropathy" and Dr. Fred says "go ahead", and I began to speak about our journey from one neuro to another and Alan having Idiopathic Peripheral Poly Neuropathy and he has had this test and that test and then Dr. Fred asks Alan if he ever had a certain test, and I chimed up with "oh, for Peripheral Vascular Disease?" and after that, it was the funniest conversation you ever heard. You see, I have learned MUCH from these boards.

I told Dr. Fred all about these boards and he was absolutely fascinated. He said "that's the most amazing thing I have ever heard, you actually know what you are talking about". Then they ordered Alan to have the Arterial Doppler and Alan said "how come", and I walk over to Alan and show him where the carotid arteries are, and what the dopper does, and what they are looking for and Dr. Fred is laughing and going. "wow do you know how lucky you are to be married to this woman". Alan laughed his head off saying "are you kidding, she massages me every day too".

It really is a no-stress situation when you go to this office. Many people (and I mean many people), never go to a doctor because their blood pressure goes up, they are scared, they can't talk to their doctor, they are rushed, etc. This is not the case. While you have to wait to be finally seen, the wait is worth it because the care you get is top notch. And if you need ANYTHING? they give you samples, I mean, they treat you like a human being and that alone can make a person's blood pressure go right down.

I mean, I will never forget when I chose Dr. Fred as my primary. I had to give up Oxford because they charge $1675 for a deductible for hospitalization and Blue Cross Mediblue does not. So I had to switch on Jan 1 of 2007. My previous doctor did not accept mediblue so during one of Alan's visits, I told Dr. Fred, "Dr. Fred, I'll be coming to see you soon, I put you down as my primary care, Alan and I have the same insurance, so you'll be my doctor from now on, I want to make an appointment next week so you can look at my frozen shoulder". He was all finished with Alan and we were about the leave when he walks over to me, examines my shoulder and says "Let's get you a workup, make you my patient now, you'll go across the street for an x-ray, you'll come here in two days, and we'll see about giving you a shot of cortizone". I WAS NOT PREPARED TO BE A PATIENT THAT DAY, but because I knew this man I said 'oh thank you.

He examined me, they took my insurance card. I was officially a patient.

Then a few days later, I go back (thinking the x-ray report had come in".

Well, you should have seen Dr. Fred when he heard the report had not come in. He called the x-ray place across the street. (They know and love him).

In two minutes flat, he had a fax in his hand with my report.

I mean, you gotta love technology and you gotta love a man who gets things done. He GETS THINGS DONE.

Even the little old ladies love him.

And because he's only 39, he will continue to learn and be even a better physician as he grows older. That's what I truly believe.

And I told him about being in the Cornell Protocol. I had all the copies of all my blood work from Cornell. He said "very very good, you gave me all I need". we'll run a new batch of tests in three months.

Well, that is tomorrow.

So I finally will see what my b-12 level is. After all the test results come back.

This should be most surprising.
melody

Melody

Melody

They can test your B12 level.

Sometimes B12 is not absorbed in the stomach and must be given by a shot once per month.

My experience with PN (as an RN and Clinical Exercise Specialist) is you can't always find a reason for what ails you and some of it is just the condition.

Some of it can be managed, some can't. I have a whopping case of sensory and autonomic neuropathy, and to be honest, pain is a pain (and life altering-It brings me to my knees if I can stand up that day), but the autonomic system going bad is life threatening....I gotta just live with that. It is like a time bomb....I can live to 100 or keel over today.

Despite struggling to live a full life, I am not planning on jumping out of any perfectly good airplanes for kicks, but I do a lot of stuff that a healthy 20 year old male would not consider doing (my finger was nicely reattached after I cut off the tip off kite-skiing---Ok, so I gave THAT up--thankfully due to PN, I didn't feel much---it was the finger or a dunk in a frozen 200 foot deep lake with a big hole in it I didn't see until too late, at my rate of speed...I must say the EMTs were impressed with my incredibly low pulse and blood pressure........I am so sick I come across like a trained athlete, LOL)

I am a 54 year old female with a more than a few hard knocks from life. I can be utterly immobile for weeks at a time, or flying past very fast. Either way, people don't see me.

EMGs don't diagnose small fiber neuropathy as well as skin biopsy...epidermal biopsies they are called. These biopsies confirm if you have small fiber neuropathy. I can't imagine putting you thru a lot of EMGs for no good reason. My EMGs are normal.

I read you walk, keep walking....you too Susie (saw this in some other post)...I am one of those crazy trail riding cyclists (on a good day )....I usually just say 'On your left'....we see people, don't worry. I am probably more dangerous in a car....most of us are. I walk on a bike trail too, and no cyclist has run me over yet, the fast ones are far less dangerous than the putzers.

The ones that fly by, can usually handle going off the trail to avoid a crash with a person.....they kinda like that stuff. If they crash, you get a good laugh....if they get to close to you, yell at them that, them your son in law is a lawyer.... You pay for the trail too!

You guys are gonna love this. I told my girlfriend all about the Methyl B-12 that I'm taking. She's 55 years old, healthy and takes B-vitamins.

Today she went to her doctor and as he was examining her she asked him "can you please give me a b-12 shot?" He said "sure", then she hit him with "oh by the way, is it Methyl or the other one". The doctor replied "how on earth do you know about Methyl B-12" and she said "Well, my friend is taking Methyl B-12 and says it's good".

The doctor said to her AND I QUOTE:

"KEEP TALKING TO YOUR GIRLFRIEND, AND FIND OUT WHAT SHE IS TAKING, I'LL BE SURE AND GIVE IT TO YOU, YOUR GIRLFRIEND SURE KNOWS HER VITAMINS". With that he gave her a B-12 shot. Now I'm not sure if it was the methyl in the shot but he did say that if she lets him know what she wants he'll get it for her. She told him "you should meet my friend, she goes on message boards and she knows about B-12".

I laughed my head off.

See how many people you guys influence??

And besides walking, in my living room I have Tony Little's Gazelle flyer (my neighbor threw it out, it was perfectly good, he just didn't want it anymore), and I also have Health Rider, and a stair stepper.

GUNG HO!!!!

Melody

Melody:

It's not understandable that most docs are several decades behind (or even misinformed for that era) on the most basic of B12 information.

However, it is understandable that most know nothing about methylcobalamin. One who specializes in neurological issues should, but everyday MDs have plenty else to keep up on and if they just knew some basics many many lives and mobilities would be saved.

I'm glad you didn't fall for the expensive B12.

cyclelops:

B12 is absorbed in the ileum, but to be absorbed normally it requires sufficient stomach acid and intrinsic factor from the stomach. However, it would be extremely rare for a person who lacks both (or even lacks a stomach) not to absorb what they need to rebuild stores with daily supplements of at least 1000 mcg.

Most docs don't know that either, even though it made it into better medical textbooks in the U.S. many years ago (was shown by Swedish researchers about 40 years ago.

rose

Im happy to hear your doing for Mel,,Kiss Kiss. Why because we like
you!!

Rose your website was a big hit with my new Endro Dr. she (young)
just loved it made notes. LJ she looked at your site said my gosh,this
is wonderfull,note note. Hey what about me i'm thinking??After all Bob
had to get to can't sit down Dr. It was wonderful to meet yet another
take there time Dr..Hmmm If you read this and you figure out who i am
let me just put in here very, very intelligent as well. r I went in, all
full of myself for loosing 80 lbs,forgetting i was there to talk about
serious tumor on kidney.She walks in we talk,she looks at websites turns
around and said i'm very pround of you for losing 90 lbs. 5 more then
stay level..HuH,,No i lost 80 lbs,went out went way down hall to scale
that's flat cannot step up with PR,she was right but
happy.She did blood work for thyroid,so on..Arranged for c-scat,she calls
you herself, yes herself for results of tests..4 Drs. now who do thiis
and just found out she lives across the street as well.

Cathie i burned all over when i took first studies,but did not at Mayo,
go figure. I ready think they are necessary. Thanks for note,it's going
to rain again,which makes me hurt and the grass grow Mel sounds like
you have good med.help,your doing fine. Heck,your going in the right
direction. Im sitting here with a cold pack on my face,on or way out of
the hospital,i was waiting to give ticket to the go get you van guy.
Some yells Sue i turn,walker doesn't BANG face first right in brick wall
fall backwards, van guy catches me. My let's just say friend Jim ran
up geee Sue you only have so many brain cells..I did not nor did my face
think that funny. Got Bob to sit down Dr.in time. His nurse put a icepack
on my face,in walks the spine Dr. smiles at Bob sitting.I can't see very
well,i hear another voice Sue you will never change,there was a Dr. i
worked with in Mi.

Your very welcome Brain Today is Grandbaby day,just got a e-mail
from my baby she is showing me a very face ,better stop asking her
if she's ok... Hope everyone is ok Ouch my nose Sue

Rose:

Do you really think I have a shot at stopping my neuropathy (I can't
even think about a miracle like reversing it). But I need some hope here.

Oh, one more question. I know that, as nerves heal, I have read that sometimes they hurt when they are repairing themselves.

Now how on earth does one tell the difference. I have only had the burning and odd buzzing since the podiatrist used that vibrating tool on my feet.

Then that my feet were all over the place, but the next day they calmed down.
Last week they burned really bad. I just started the B-12 methyl about 3 days ago. I take 3 to 4 tablets (1000 each) a day. Since i know I can't overdose on the stuff I'm not worried. I feel fine otherwise.

When do I know that it's working. Will it stop burning, stop buzzing altogther??

I mean, when I wake up in the morning, I'm fine. But as the day goes on, there's a bit of burning. And it's usually when I sit or lay down.

It's a bit different since I'm on the b-12. Nothing like that first night when I came home from the podiatrist and that was about a month ago.

But the night before I started taking the B-12 methyl, well, I kept saying to myself "why didn't I listen to people on the boards, I should have taken this stuff last year". I know, I was stupid. But at least I learn.

I know it takes nerves a long long time to repair themselves. What should I be looking for. I'm a diabetic 20 years. I have absolutely no signs of it in my eyes (as per my eye doctor, and he was amazed), and my dentist said "you have no diabetes in your gums).

So why the feet? Did the podiatrist do this to me???

I'm really curious.
Thanks, Melody

Sue,

That's fantastic news. I'm thrilled to hear of docs who are not too busy to help patients while putting all their energy into pretending to know it all.

Hooray for that doc, and I am so pleased that my site has been a help to her.
There's so much more to put up on the site, but what is there is sorely needed info.

Melody,

Very often only time will tell. I wouldn't count on it, but it could happen, and I would certainly keep up the methylcobalamin just in case.

And only time, often a very long time, will tell whether you are improving. I hope you are. Some lucky people see an improvement within days, others weeks, some only after months, and if the central nervous system has been affected the body's work can continue for years.

I suspect that your feet were especially sensitive, and that would be likely from diabetes alone. And in addition to that, many other causes of neuropathy would affect the feet. That is a very common location for symptoms to be first noticed, if for no other reason that those nerves are farthest from the central nervous system.

rose

Rose:

We just came back from Alan's podiatrist visit. He's doing fine and healing. We are postponing his IVIG home infusion until the next week.

Rose, this is what you wrote: "Very often only time will tell. I wouldn't count on it, but it could happen, and I would certainly keep up the methylcobalamin just in case."

Now if this is true, what is the purpose of taking the B-12 methyl????JUST IN CASE???? I thought I had a shot here!!!! I really did.

And oddly enough, about two hourse ago, when Alan's podiatrist was examining his foot ulcer (this is not the regular podiatrist, he's on vacation, this is his partner, he's a very good doctor), well, I simply asked him "Can you give Alan a B-12 shot (now the other guy used to say "how about a complimentary B-12), and I would say "why not"?? Didn't happen all the time, but it did happen.

So when I asked this particular Doctor if he could give Alan a B-12 shot, he said to me "why would I do that, does he have a B-12 deficiency??" I said "not that I know of, but isn't B-12 methyl good for nerve repair and Alan has neuropahy".

This is his response:

"I don't believe any of this. B-12 shots are only for people who are B-12 deficient. There is not other purpose to give a B-12 injection. I am from the old school, and I studied under a man who knew all about this and I remember what he said and now I don't go for all this vitamin stuff, and B-12"

Since I had no idea how to respond I politely said "oh, okay, thanks anyway".
He wrapped up Alan (he did a great job on his foot and it's healing nicely) and we left.

But I can't forget what he said. He was absolutely adamant about B-12.

Now how different my appointment WAS THIS MORNING.

At 8:30 A.M. I arrived to get my blood tests at Dr. Fred's. The male nurse (who is also an ex army medic and is going to med school) well he does all the blood tests. As he sits me down I simply explained what I wanted and I also said "I want to know my b-12 level and my throid".

He said "no problem" and took all the vials. Then I asked him "what do you know bout Intrinsic factor?" and he replied: "oh, you need intrinsic factor and stomach acid for the B-12 to be absorbed in the body" I then asked Frank 'what do you know about the forms of B-12?" and he goes "oh you mean the cyano and the methyl?" and I said "yes" and he goes:

"well, the stuff in the stores is a waste because it is not absorbed, the stuff you SHOULD BE TAKING IS THE METHYL B-12. Everybody knows that"!!! I then asked him if he could give me a B-12 shot and he said "sure', but it's cyano" He showed me the little bottle. I asked him to see about getting in the methyl form. He knew all about Methyl and said "You're on the right stuff".

So a medical student, (25 years old) ex army medic, knows all about methyl b-12 and didn't pooh pooh it whatsoever.

And a podiatrist (in his 50's) who says he's from the old school said he doesn't go for this vitamin stuff and would never give AND DOESN'T BELIEVE IN GIVING B-12 shots. Makes one wonder now doesn't it???



Melody

And it does show how some doctors will hold onto whatever they learned in their initial medical school training and will not update their thought processes even as medical knowledge changes.

The most recent obvious example of this involves stomach ulcers. For many years the conventional medical wisdom was that ulcers came about as a result of stress, too much acid production, or genetic factros. Several theorists posited that they came about from bacterial infection--in fact, said it was almost impossible to get an ulcer without the presence of H. Pylori bacteria--and they were laughed at for years. Lo and behold, a couple of decades of research seems to have proven them correct. (There have been a number of threads on this in the Gluten Sensitivity sectin at Neurotalk and at Braintalk if anyone wants teh particulars.) But it seems as if new knowledge diffuses slowly through the medicla community--and it doesn't reach all corners.

As far as B-12 goes, yes, people with deficiencies need it desperately. But the reason som any of us without obvious deficiencies still take it is due to the neuroprotective effects, especially those of methylcobalamin (which is the form used by the nervous system and a number of other bodily organs). B-12 is absolutely necessary for healthy myelin maintenance and apparently for axonal integrity. And since it's cheap, and safe, there's really no reaon not to take it if one has neural symptoms. (And that's not even considering it has other good effects, such as vascular protection through lowering homocystine levels. Good reason for a diabetic to take it.)

The methylcobalamin form is very important for some who have trouble, due to genetic enzyme problems, converting from cyanocobalamin. Even if one doesn't have this difficulty, methylcobalamin is more readily usable--cyanocobalamin had to be converted to methylcobalamin or one of the other usable forms, and who needs to have a cyanide group floating around?

Much of this, of course, can be found through Rose's website, which is well-documented with medical papers. There are other places, such as up to date medical texbooks, one can also find it. Too bad you can't get some doctors to READ.