Karen,

I'm very glad you were helped. For most people just taking 1 methylcobalamin tablet each day would be as good or better (and in the brand I am most familiar with, the bottle of methylcobalamin would last two months).

Yes, cyanocobalamin is less expensive than methylcobalamin, but they are not the same.

rose

Rose-
I was included in the b-12 study at the same time I began b-12 therapy. Dr. Evatt is my treating physician for the b-12 deficiency while monitoring my movement disorder treatment for Essential Tremor. Though most of her study is dealing with Parkinson's and b-12 deficiency, she's included other movement disorders in the study...

Hi Rose,

No they are not the same.



I've never been able to take enought Methylcobalamin for it to work equally well for me.

I think if I just had less stress, or were better able to handle stress, that they would probably be fine.

I remember Fred talking about how much Methyl he took. I can't remember how he spelled it.

He was so kind and sent me some. I was soooo happy not to have to do shots, just major delighted.

But after a month or so it was clear that I wasn't having enough B12.

When my eyesight becomes blurry, I start having peripheral neuropathy again, my hands go numb, I feel depressed... then I know I'm not having enough B12.

So I went back to shots.

I suspect that at that time, that was several years ago, I didn't realize how many lozenges I'd have to have to equal a B12 shot.

Recently I tried having a lot more lozenges, but then I had teeth issues...

so the shots are by far the best for me.

I feel certain that if I had not attempted suicide and been given a test for B12 while I was in hospital, which showed my "profound deficiency", that I would be very sick today with little hope of recovery.

I know I've been very sick... but tetanus is different than if I had the kind of disease that is commonly thought to be one you cannot recover from.

I remain very impressed and hopeful because of accounts like Matty's.

Which reminds me, I need to do a post to RN.

Hi RN,

I know you weren't writing to me, but your posts struck me because I've recently had so much trouble with my left arm.

I had meant to write to you last night, but I got confused. (Sadly I get confused way too often.)

Because I didn't have electricity for a while I got out of the habit of writing notes... so I can't be sure when the particular pain in my left arm began. It was also so numb that it was dead weight.

Oh... I remember now, it was a minimal court thing... but so irritating. (I hired a man to build my deck... and after 18 hours for which I was paying him $25 an hour, he had put down 7 boards... and then he took me to court. The court decided that I hadn't given him enough time. )

It was extremely scary to have my left arm hurt so much and then be so numb that I had to use my right hand to lift it.

Everything I found on the internet was pretty worrying.

Plus, my chin kept cramping...

So I thought that since my grandfather died of a heart attack, that I might be having the women's equivalent.

I took extra B12 shots. For me that's two a day. And I stayed in bed. I could barely move, so staying in bed was not a choice so much as a condition.


I see that you have a shot every two weeks, and then two 5mg a day.

I get so confused by maths... it's very irritating. Still, let me attempt to think about this... if 1,000 mcg is about equal to a shot a month, then 5mg is equal to about 5 shots a month (if taken every day), so 10 mg would be like a shot every three days.

So, you're having about a third to a sixth as much as I am having... and you find that your symptoms are increasing.

(Plus, you are working.)

(But then I have all the stress from the legal things that are going on - I had my condo foreclosed and sold without notice to me of the judgment... major stressful as I'd paid on it for 17 years and it was my savings for my old age.)


To me, if you feel as if you need more B12, I am pretty certain you are right.


When I was first diagnosed, and I went above 180 for my B12 level, I had to beg to get a B12 shot because the doctors were all in agreement at the clinic where I went that my B12 was normal and I no longer needed shots, especially since I wasn't a vegitarian.

Oops, getting upset.


So I know what it's like to feel the difference that it makes, and then be denied injections.


My feeling is that I would be much healthier today if I had been given adequate treatment... and I don't mean enough B12 to bring my level up above 200.

As it was the treatment I received brought back some feeling to my feet, but not enough so that I could feel the broken bit of darning needle in my toe... which is how I got tetanus.


To me, the need for significant amounts of B12 exists in some people. I am one of them.

I am just so lucky that one of the doctors I went to, a holistic M.D., gave me a prescription for a shot a day for a year.

That changed everything for me, once I saw (felt) what it did.



Thank you for your post.

I'd sure like to hear some more about your left arm... mine's much better except when there are legal deadlines...

Jon,

Strange study. Nothing double blind (or even single blind) about that. Maybe your doc is keeping the study in mind while treating you?

rose

Karen,

Cyanocobalamin is unusable as it is. It must be converted by the body to a smaller amount of methylcobalamin to be used.

There may be some very rare people who benefit from cyanocobalamin shots as much or more than methylcobalamin orally. Most people can convert cyanocobalamin to a smaller amount of methylcobalamin, so it's great that you are getting what you need and are happy with the treatment.

However, many people make the mistake of believing that because their body does not show the same response days, weeks, months later that it did with initial treatment that the current treatment isn't working. This is not a reasonable assumption with B12 for at least two reasons: 1) B12 is stored, all but a very few will continue to work on repairs using stored B12 for quite a long while, assuming they have gotten enough initially to build stores up quite a bit. 2) When the body works on repairs, the next weeks, months, etc., are not the same as the initial ones.

As I have told many people here, there is often a honeymoon period during which things seem to improve very rapidly (this can happen for at least two reasons). After that, if damage was slight, things may be rosy. But, if damage was severe, after the honeymoon the body gets to work on the hard stuff. And that is often when symptoms become worse as the condition of the body is being improved.

I am very glad you are getting what you need. But your individual make-up/circumstances/etc., are not applicable to others.

rose

It's much more complicated than that. A shot per month is not equal to 1000 mcg methylcobalamin per day orally.

Even if the least efficient type of B12 (cyanocobalamin) is taken, people taking a daily oral dose generally have better lab results over the long run than people getting a shot a month.

And methylcobalamin is even better.

rose

Hi Rose, yes, I know about cyanocobalamin needing to be turned into the Methyl form in order for our bodies to use it.

But I'm sure I've read posts of yours where you assure that the cyanocobalamin is fine and replaces as well as anything. Those posts of yours are ones I don't understand. (Not to bother explaining, since I've told you why I use the shots, merely cost, given how much replacement I need.)

The most important thing for people to recognize and implement in their health lives is learning about themselves so that they know what works for them.

Taking notes as they take B12 so that they can see what it does for them is essential to understanding how much THEY need.

You may very well need a lot less than me. I don't know if your mother had pernicious anemia.

I'm glad you were able to get treatment.

I've never understood how you got worse, though, after treatment began.

That's sure not something I experienced.

And when my symptoms got worse and I told the doctors (that was when I was living in the hydrogen sulfide that I didn't know about) they said -- both my neurologist and my general practioner -- that once B12 is being treated the symptoms can't get worse.

What I know for a fact is that the toxin hydrogen sulfide caused symptoms that were identical to those caused by low B12...

and after a LOT of supplementation, those symptoms are reducing.

I also know that stress can reduce B12. I know that from the large number of regular tests that I had over a long period of time, and the notes I kept.

It's a lovely day here and my morning glories are so smile making.
I better go do some things, and use the morning glories to stave off the stress.

Do you know what it is equal to?

I thought in the research that I read it said the 1000mcg was about the same as a shot a month...

curious....

Did you post more about the study somewhere? Sounds interesting.

One of the things that concerns me is that most B12 recommendations, based on lab tests, are the results of studies done on healthy people with intact stores of B12.

My neurologist told me that it takes a very long time to rebuild the stores...

What I found, is that by taking more I reduced symptoms long after they were supposed to have become "permanent" --

so I wish I'd been given more, sooner so that I'd be much more well now.

It is the slowness of this process that I have found to be reflected in my fingernails... In 1997 I had thick, raised ridges on my fingernails... at the same time I had extreme bone pain in my legs and many other symptoms of low B12.

Now I no longer have the extreme bone pain, but my feet do not react properly to temperature... and I have a hard time moving my toes.

I feel that had the original treatment, ten years ago, been better, that is, more B12 for a long initial period, I might be without these symptoms today.

However, I still have moderate ridges on my left ring finger... so I hope that those ridges and my remaining symptoms go away.