I have a question about my neuropathy!!!
 

I also posted this on the other brain talks.

Hi all:

Okay, you all know I'm a diabetic, and have been for over 20 years. Two years ago, I finally got my diabetes under control and have been good to go. I eat a mostly vegetarian diet (absolutly no red meat for at least 10 years). I didn't take vitamins either. I know, shoot me in the noodle for that one.

But I lost weight, they lowered my diabetic meds, my blood pressure is fine (with zestoretic) and the folks at Cornell Medical Center ACCORD PROGRAM, are pleased as punch with what I've achieved.

Last year, they tested my toes, found they were numb and said "you have neuropathy". I was surprised as I had absolutely no symtoms.

Then last month, the podiatrist used this vibrating tool on me, and EVERYTHING ERUPTED after that. The pins and needles and burning stopped the next day. I said "okay, he woke up my nerves, now they're quiet. I'll continue to maining my strict sugar control. I'll be okay" How stupid of me,

Then I read all about the methy b-12 (which I had not been taking) and the b-12 I had been taking was in a B complex pill which was about 30 mcgs of b-12 (cyano). So after reading about the B-12 methyl, of course I ordered it. (it should arrive today).

WELL, LAST NIGHT WAS SOMETHING ELSE!!!!

Now the weather here has been nuts, going from cold to hot. I LOVE IT WHEN IT'S HOT, nothing bothers me.

Well, last night I was sitting at the computer when the burning hit. NO pain, no buzzing, no pins and needles, just like I had been to the beach (remember those days when you sat in the sun and fried yourself, and you came home, took a shower, you turned bright red and said 'Oh my god, I must have been out of my mind to fry in the sun!!!!). Well, last night, it was like I spent a day at the beach with my feet in the sun. No stabbing pain, a little electric shock here and there but 98% was the burning. I tried massaging my calves but it made it worse, so I stopped that. I didn't even use the blue stuff because it didn't work when I DID use it.

And as I type this right now, it's a beautiful day outside, the sun is shining, and I'm fine. FINE!!! I do not understand what is happening to me.

I DO have a theory and maybe one of you learned people can agree, disagree or inform me.

I believe I have been getting ABSOLUTELY NO B-12 for at least 10 years). I ate no meat, no steak, no hamburger, NO RED MEAT!!! And the b-complex I took (as of last year), well the b-12 was 30 mcg and as we know, that's absolutely nothing)

I am trying to tell myself "you have no b-12 and that's why your neuropathy is burning, and the podiatrist must have woken up every nerve in your feet and started a chain reaction (you know what I mean) because I never had any of this up until he used that vibrating tool thing on my feet.

So do you think I have a chance of getting the burning under control when I begin the B-12 methyl thing. I'll be taking two 1000 pills a day. I'll take more if you think I should get it in my system soon.

I don't want to go to the neuro and start getting emgs, spinal taps etc. because what the hell would that tell me "you have neuropathy, take lyrica!!!" I know I have neuropath, and I really don't want to take an anti-seizure med until I at least give the B-12 methyl a chance to work.

I read some really good stuff in a stud on methyl b-12. Some people got helped with their diabetic neuropathy in as little as a week. I don't expect such drastic results but I would at least like to know I'm in the right direction.

Also, I drink coffee in the morning and coffee after dinner. Two cups total the whole day. The morning one has half caffeine and half no caffeine (it's a blend from Maxwell House, called Maxwell House light. And the night time is a cup of decaf. Should I give up coffee completely?

I also put garlic powder on my food. I don't eat any onions and I live on fish, veggies. I'm not a spice person so there's no hot pepper on anything.

Believe me, if any of you can tell me why I'm burning (all of a sudden) (I'm going out to buy the bio-freeze today, just in case tonight I go on fire again).

Thanks,
Melody

P.S. It's the next day, the methyl arrived, I have taken two 1000 pills so far. I'm still alive!!! lol
I even went walking today. Trying to do this everyday.

Mel
 

Bio-frezze is that what you said,hmm i don't recall ever hearing that
one. Is it suppose to numb the burning.:confused:

Senory neuropathies and i'm not saying you have that buttttit can be dull,
goes away,and then back it comes the BURNING,in your case,it can feel like
small stabs,or a lot of stabbing..You said you had numb toes, you had no
problems,then Pod.did his thing, then woke them up burning off and on.
I know you have taken good care of yourself..And i truly belieave in
everything your doing.:)



But if you were Alan,you would have him over to Neuro Dr. right away.PN
comes and goes thus the Silent Diease right on to the sometimes screaming
diiease...Mel you went to the Dentest at least go check you want to keep
on dancing!!!And yes sometimes weather change makes a differeence to
to me...You asked,better safe then sorry. :) :) Sue

I think you should reconsider taking a multi-bit--even generic is OK. I am a registered dietitian with a Masters in Clinical Nutrition. Now vitamins are for INSURANCE--and a deficiency fo B-vits can cause neurapathy to be worse. It is difficult to insure that you gent enough servings from the breads and cereals group to insure enough B vits. So, just take a multi vit and you do not have to worry about the individual B vits unless your physician finds a special need for them. Remember thiamin (B1), riboflavin (B2), niacin (B3), folic acid, B6, B12 (and a few more) are all important for proper nerve function. Nancy Stephens

Sue: I'm in the diabetic protocol at Cornell Medical Center in NYC. Have been for 2 years. That's who diagnosed my neuropathy. I'm seeing them on May 4th. They already know about the podiatrist visit. I'm going to see if they can send me to a neuro on their team. But if not, I might see Alan's neuro. But honestly, I know I have neuropathy. I know what she'll say.
She'll say, well for the pins and needles, there is neurontin, lyrica. I've been THROUGH ALL OF THIS FOR 18 YEARS WITH ALAN. I don't want to be on any anti-seizure meds until I abolutely have no choice in the matter. I want to do the Vitamin b-12 methyl thing first. Today, I did 2 power walks. Yeah for me. Strapped on my ipod and away I went!!!!

And I've had enough emgs thank you very much. I almost punched out the nurse the last time they tried to do that to me.

So if I do have to go, I'll go. I guess they would do the neurological examination, touch fingers to nose, bend your toes this way and that. Do the sensory thing with the tuning fork. I don't care about that.

But if they want to do an emg and nerve conduction test on me, well WHAT IS THIS FOR, I know I'm diabetic for 20 years. I was not controlled until 2 years ago (shame on me, I know).

I don't like pain, I don't like emg's and nerve conduction tests.

I'm going to discuss all of this with my endocrinologist at Cornell Medical Center.

Oh, Nancy:

I will definitely be taking a multivitamin.
And thank you very much for pointing this out to me.
I may learn late BUT I DO LEARN!!!!

lol
Melody

Melody I remember....
 

that sort of 'bad sunburn' feeling well! But I think that your case is far from mine. As for the heat or cold feeling...it's kinky [for lack of a better word]. I know someone w/MS who'd ALWAYS HOT[all over], and I can never be HOT enuf [almost all over]!. When I went thru my 'hot phases', Ice was waay too much, so I found a spray bottle, put some water in it and plain kept it handy...sprayed tepid water on the bothered areas and let it 'evaporate'...at times that seemed too cold even with burning feet. Alchohol, eucalyptus etc were just too 'bothering' for that tender, fussy skin then.

If it were me, after everything I've been thru, the simple request to have your thyroid panels done, especially as you're diabetic shouldn't be unreasonable... there are times in our lives when this stuff just 'acts' up. As you more than well know, it's all about checking, double-checking and eliminating. Besides you have some super relationships with your docs, this is when that all really counts! Count your blessings!

Face it, they usually don't know why it all happens when it happens, but, YOU good and strong person know that WHEN it happens to ask the right people...Sounds like on Monday, at Xhour:-.00 mins, .31 seconds you will be talking to Dr Fred's staff and being 'fit/smooshed' into an appointment either Monday or Tuesday!

None of us like the pains, ANY of them, nor the tests...But, you know what Alan's gone thru, I dearly hope YOU don't have to experience even 10% of THAT. I constantly am amazed by all here who can still think actually type and complete whole sentences after some of the meds we take to 'help' us....WE are all far tougher than we are given credit for.
That said, does'nt make YOUR pain any less real tho, and burning is a real PAIN. Wish it was'nt so... Hugs for now, and maybe some pain free moments...lessening day by day! - j

Dahlek:

I have had my thyroid checked. It's normal.
But I know Dr. Fred. We had planned to run ALL the tests when I would have my next visit. So yes indeed, on Monday, I'll probably just go there and chat with him (he actually comes into the waiting room when someone comes by (either to get a prescription or just to ask a question; sometimes you wait, but WHO CARES?? if you get to speak to Dr. Fred. He always shakes your hand or takes your arm.

So on Monday, I'll make an appointment for the blood work, They do this every wednesday. Wednesday morning is blood drawing day at that office.

Wouldn't it be a ***** if my thyroid is screwed up. It has always been normal. My mother had a thyroid operation when I was 14, my father had a goiter. My son has thyroid stuff and is on Armour.

So far, it has skipped me. My Aunt has been on Synthroid for her whole life.

oh well, at least I'm on my methyl B-12.

take care, will update.
Melody

Mel
 

Calm down girlfriend,i know where you go wish i was there with you!!:)
I would ratter take and do take the Vits..I would power walk with my
walker,but far to many cracks in the sidewalk..The bicycle trail people
will come up behind,you and ring ring scare you to pieces!!

I have to go Monday to see if my adrenali tumor has grown,which means,
drinking yukky stuff for c-scan. Really what is Bio-frezze sorry for spelling.

Good news :) :) Bob can SIT down,and has already been down the street
to one of the girls...Geee i will be very quite now.;) Sue

Hi Mel, i am really sorry to read that you are having the burning feet problems now & i hope that the B12 supplementation yields good results for you soon.
It takes time for the nerves to heal, but our bodies have a remarkable ability to repair itself, once given a chance to do so.

The numb toes, were of course signs of damaged small fibres, as the small fibre's job is to give information to the brain as it interputs feelings of pain, heat, cold & vibration which you really did experience their reaction to that podiatrist vibrating machine.

As to " what or why " started them burning all of a sudden ", someone else may be able to explain it better than me, but all i would say that your nerves are telling you in a more noticeable way now than before, that they are damaged & perhaps more than were before.

I would not class coffee as as neuro toxin especially at only a couple cups of coffee a day, other things like heavy alcohol, lead, arsenic etc. are what you call real neuro toxins that do really affect our nerves badly.

You guys in the US are so lucky to be able to get Methylcobalamin so cheap and easy, i think the others will say 2 mg per day is enough and a good amount to take, which it is, but personally, if i could get this gold so readily i would take 5 or 10 mg a day, but thats just my choice only.
I know you won't muck around and you will get this problem reversed in no time.
take care
Brian :)

Thiamine...
 

I'll repeat what I have discovered. Thiamine really works for burning.
200-300 mg/day in divided doses for one month, is worth trying.
It is very inexpensive, at any drugstore.

Also the magnesium connection is important for diabetics, who lose it thru the urine. Magnesium closes the NMDA pain channels, and reduces pain.

Burning comes and goes for me. It is worse when the weather is warm, can be triggered by MSG in food, or histamine containing foods. (old fish--tomato sauces). If fish is not very fresh the bacteria on it create histamine which can lead to skin burning.

Using a menthol containing rub (like Biofreeze or IcyHot) helps many, but does not change the CAUSE of the burning.

Question for Mrs. D. and others
 

Hi Mrs. D. and others:

I have been reading for a long long time on this Forum about B12 and the best form. My question is: where does one purchase this? I did see it listed on several Internet sites and it seems fairly inexpensive. I have looked in the vitamin sections of various big box stores and drugstores and never see any B12 in the methyl form - only the other one, which is not the best I gather.
So where is everybody buying their B12? Thanks for your answers.

Shirley H.

Shirley:

Here you go!! This is what I purchased. Started it yesterday. Today, I bought my B-complex Cost a whopping $5.95 cents for 100 pills. Now how cool is that.

Now on May 1, GNC, has a buy one get the other one half off.

That's when I will get my Alpha Lipoic Acid and Thiamin.

http://www.iherb.com/store/ProductDe...&pid=JRW-18001


Now Sue: Here's the information on Bio-Freeze. I bought the exact same thing in my local CVS (has same ingredience as Bio-Freeze)
But just so you know what Bio-Freeze is, here's the link:

http://www.biofreeze.com/

I LOVE THESE BOARDS AND YOU GUYS!!! And a special hug to Mrs. D.!!!!

Melody

Mel
 

I am on Methyl B-12,is it to late i don't care.
I was a skinny,100 lbs most of life,in and in out of hospital i was
sick alot. This was before all these crap people do to them selfs
just to be thin. I was told i had Diabetes 1 or pre-diabetes.

The late 40's i gained weight,recently lost 80 lbs,because went to Diabectic
2 and nearly lost my foot..We eat very much alike,i gave up red meat
about 10 years ago..Why i was raising 3 vegeterian children if they were
going to be healthy so was I!! :) But here i am with feet,lower legs,
hands to elbow and now my shoulder. I dance with my walker,it's a put
your hands threw type,i do yoga. This makes me happy and my neuro
happy.

Does anybody know if there is a law,i would be happy to send Brian
The Methy B-12 at US price. I don't want my daughter to have to bail
me out of jail.Shes a lawyer but anyday going to have baby.

I took 3 throid tests before i found out it was low
WE both have family history.
I think my problems really got bad with the soj. Syndrome,





But please what is bio-freeze????'m not trying to be funny i'm very serious.
Gout can sometme make feet not just toe burn..When i use to run
that made my feet burn at times..:hug: :hug: Sue I' going to get a
haircut. yeaaaaaaaaa

Hi Melody,
Sorry that you are having burning feet problems, I hope that this was a one off and it won’t come back, if not you have my sympathies I have this all the time along with the stabbing electric shocks aching…………… Anyway lots of people here are far more knowledgeable about all this than me I just wanted to pop in and say --thinking of ya!
Lupin

Melody Walmart has very cheap B1....about 3.87 for 100 tablets 250mg. Whats the name of the CVS biofreeze?....if you say biofreeze im going to feel stupid...haha

Biofreeze....
 

Read all about it!

http://www.biofreeze.com/

-j

Hi everybody.

Well, since i'm on the B-12, my burning is not so severe. It has a lot to do with the weather. I won't really know anything for quite a while but I'm patient.

Now the Bio-Freeze thing......

I use the CVS brand which is called Freeze IT. Doesn't do a thing for neuropathy, but for arthritis (as Alan will attest) IT IS GREAT!!!

Here is what it looks like!!!

http://i73.photobucket.com/albums/i2...FREEZE_IT1.jpg

http://i73.photobucket.com/albums/i2.../FREEZ_IT2.jpg

Mel,

Just a few more things to consider . . . try to take your B-12 apart from any other vitamins, medications, food, etc. Best way to maximize absorption. I would also suggest that you don't add anything else right now - this would be the best way to know if the B-12 makes a difference.

If the burning gets worse, you might try some other topicals that contain menthol. Biofreeze has never worked for me but some others have. I would second Mrs. D's suggestion of magnesium and thiamine, but would hold off for a bit if you can.

I tend to agree with you about seeing a neurologist and so forth . . . I think it is very likely that any neuropathy you have will get blamed, rightly or wrongly, on your diabetes. It will be worthwhile to see someone down the road who would take an in-depth look to see if there is any other possible cause for neuropathy. And of course there are other reasons to get a proper workup. I say this only if things stay as they are . . . if your sxs change significantly, then you will just have to get seen sooner.

rafi

Oh . . . someone was asking about where to get methyl B-12 - - many of us here (I have absolutely no connection to this place) use an online source that has a very wide selection at great prices:

www.iherb.com

What about if I take two b-12 sublingual 1000 pills right before I go to bed at night.

When I get up in the a.m. I do the lantus and high blood pressure pill, and I take my b-complex.

Since I don't eat anything after 7 p.m. and I go to bed around 11:30, do you think it's okay to take 2 1000 of the methyl b-12 together or should i break it up and take 1 before retiring and one between lunch and dinner.

How would that be??? Anybody know for sure???

Melody
P.S. Why should I not buy the alpha lipoic and the thiamine???

It's fine to take the B12 together or separately, as long as each dose is no less than 1000 mcg.

For many people, maybe most, it doesn't matter what time of day the B12 is taken. Some prefer to take it in the morning. Doesn't make any difference to me.

rose

Thank you Rose.

Starting tomorrow night I'll be taking the two Methyl B-12s. (I already took my two tablets today and I'm afraid of overdosing (is this possible???).

Saw your B-12 website.

Very nice and much info. Good job!!!

Melody

Rose
 

I like your website. It is laid out in an easy to read and understand manner... There is so much useful information there.

Cathie

Hey Melody
 

Do you remember me posting on the old BT that the EMG/Nerve Conduction studies set me on fire all over? If you can do without those, I strongly recommend it, since you are already having burning issues...

I think there was at least one other person who posted back then that they had had a similar reaction... I know in PN that the nerves can either by hypo or hyper active. I guess in this case, our sensory nerves must be hyperreactive to stimulation...

I am going to try MrsD's thiamine suggestion.

If you haven't already, try the ColPak icepacks wrapped in a hand towel...

Cathie

Mel,

No need to worry about overdosing on the B-12. You could ingest handfuls of the stuff and would be fine. Most sources list no known levels of toxicity. It is water soluble - your body will use what it needs and the rest will be excreted as waste in urine.

Not sure if you were asking again about the thiamine and ALA - I gave one opinion, there may be others, but I am suggesting that it would be useful to hold off on other supplements for a bit to see what effect, if any, of the B-12.

rafi

Does anybody know if there is a law,i would be happy to send Brian
The Methy B-12 at US price. I don't want my daughter to have to bail
me out of jail.Shes a lawyer but anyday going to have baby.

.................................................. .................................................. .....
Thanks Sue for your very kind offer :):) - I have sent you a Pm:

Brian :)


Melody - I know your a smart girl and you will see a neuro about this, as well, won't you ??


Brian

Thanks for the Freeze It link...
 

I'll check that out....if it is less than the $7.00 I pay for Biofreeze, I'll give one a try. Is it a gel? Is it blue? Alot depends on the base..whether the Ilex will go
thru the skin for therapeutic effects.

I don't put it on the bottoms of my feet, only the tops. It works really fast
to reduce burning when I have a spell.

The menthol in it stimulates cold receptors, which then mask the burning heat
receptors. Menthol is used for itching also.

The Freeze It is a clear gel (in the roll on version). And last night, the most amazing thing happened. Because I had put it on Alan, and it did nothing, I assumed it wouldn't do anything for me either.

So when my feet started burning (on top), I rolled on some of the Freez-it and lo and behold, the burning stopped. I went to bed and had no problems and when I woke up, I was fine (and I continue to be fine, thank the good lord for that).

In CVS, the Freeze it regularly says $11.98 but it was on sale for $7.99 for 88 ml or 3 fluid oz.


-----------------------------------------------------------

I was just surfing the net for more information on Methyl B-12
and I came across this link.

http://www.remedydirect.com/NEU/ProductInformation.htm

This is a product that combines Methyl with B-1 and since there was no information on how many capsules or pills, I decided to call the phone number on the site. The lady said "well, you start out with 4 capsules a day, two in the morning and two at night". I said 'well, how much is in each capsule?" and she said 'oh, there is 1000 mcg of methyl b-12 in each capsule". So I said "oh, so you are taking 4000 mcg of the methy b-12 a day.?" And she said "oh, that's just to start, you will obviously take more as you go on. You should see results the next day (imagine that!!!!!!!).
Guess how much 100 capsules of this stuff is? $39.95.

I ordered methyl b-12 from iherb (1000 mcs) for $7 and change.

My goodness.

Melody

Well, you just discovered how easy it is to assume that because something did (did not) work for someone else, that it will work (not work) for you. I pretty much assumed that -- if both of us had the same disease.

Actually, it turns out that much more of medicine is that way than commonly assumed. In any event, you have now had your own demonstration of why each person with PN has to try those things that make sense, regardless of someone else's response to any given therapeutic treatment.

Sometimes I am almost reluctant to post some of my own responses to things I have tried . . . especially if the result has been negative. While we can certainly learn things from other's reactions to various things -- the most important thing, whether we will get benefit, is impossible to learn.

Anyway, I am glad you found something else that helps with the burning. And it might be a good idea to have something else ready to try in case the Freez-it stops being effective.

rafi

Well, I just had a conversation with Alan (he's sitting in the kitchen with his FOOT PROPPED UP ON ANOTHER CHAIR because of what he did to himself (see my thread on that one). I said to him "I am determined to reverse my neuropathy". He laughed his head off and said "oh yeah, knowing you, you'll try anything, but if you reverse THIS, I'll buy you a diamond ring'.

Since I never had a diamond ring in my life, at least I have a goal!!!

Since I found out I have neuropathy (and god knows how long it has been doing it's thing in my body), I have been determined to beat this thing or DIE TRYING!!!

So I'll take my doses of Methyl B-12, do my power walks and if God is willing, and all the forces in the universe are on my side, (Well, if it works for the Yogis in India, who can control their heartbeats and stand on one leg for days on end), then why can't my body heal itself??? Alan thinks I'm completely out of my mind but well, I've lost a lot in my life.

I just can't let the stress get to me. I have to try and heal my body.

I am going for blood tests Wednesday morning and I'm having a B-12 level done and thryoid panels and everything else that Dr. Fred orders when you first get blood tests done. Then I'll see him next week.

Oh, I have a question. How come, when Alan and I were in the podiatrist's office yesterday (as the doc was working on Alan), I asked the doc, "what do you feel about Methyl B-12 for nerve repair? and he responded "You mean cyanocobalimi, right?" and I said "no, not cyano, but the Methylcobalimin?" and he goes "I don't know anything about the Methyl but I do like my patients to be on a good B-Complex.

SO HOW COME THIS GUY DOESN'T KNOW ABOUT METHYL B-12??????

Melody

Melody, ask yourself this:
 

When did Doc Fred receive his degree? Soo much has 'evolved' since some docs got their degrees, that doesn't mean that you should drop him...he sounds too good to be true in other ways. But, Endo's and diabetes counselors are far more up to date on such issues, really.

For both you [w/no diabetes] and Alan [w/diabetes] possibly a diabetes NP or nutrition counselor would/could be a way to go? If I were you, I'd also get Alan one of those foot mirrors so he can really check and SEE the bottoms of his feet...good, bad and ugly! Even if your neuropathy isn't due to diabetes, you really should follow all the steps and treat your feet as if it was. I mean, you can BONK your foot/feet and not know you'e done major damage. It all is one heck of a scary prospect, better to be cautious than in the hospital!

Hugs! - j

The Podiatrist...
 

Why? Because few doctors have much knowledge in nutrition and also in the use of vitamins/supplements in healing... You probably get more education on this board listening to some of the people here who are extremely knowledgeable in these areas...

I may get blasted for this, however, prescribing vitamins and such do not make drug companies any money... Doctors only prescribe what they learn (from the cute little drug reps in the mini skirts) :) :) :) There are no cute little reps going around from the vitamin and supplement companies, because most of the results in the use of vitamins/supplements are not supported by studies done under strict scientific regimens...

I do think that some of the younger doctors are beginning to pick up on some of this though. I had to go to Urgent Care a couple of months or so ago. When the doc went over my list of meds (croak), he said, "You are taking this B12 for pain, aren't you?" Faint!!! There have been a couple of others who have recognized a connection between the use of B12 and pain.

I have questioned why the use of oral B12 doesn't seem to help my pain as much as it used to. The one thing I always forget to include in my health history is the presence of parietal cell antibodies in my bloodwork. These are cells in the stomach which provide "intrinsic factor" which promotes the absorption of B12. Maybe I just am not getting enough of the intrinsic factor to get oral B12 absorbed, I don't know.

One research doc thought perhaps, with the autoimmune issues, it might not be processed properly. I take injectible once a week and it helps a lot. I have read too much of Rose's B12 work though and STILL take oral regardless. As someone posted, too much is not going to hurt you. The excess is eliminated in urine...

Cathie

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

Miscellaneous
 

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:cool: )....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.:D 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....:D 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, :thud: 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

Mel
 

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. :D 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 :confused: 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...:hug: 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

Dr. more interested in helping patients than protecting ego
 

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

Yeah, it does make one wonder.
 

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.