Nerves regenerate?
 

wow! that would be awsome. does it matter what the problem is though?
i have read that a few people have gotten impovement.
tried the stickies and couldnt see (yet) what modes might help. is there a sticky about modes of therapy that have helped people? i know about the b12. doing that. looking for something else to add to my plate.
thanks
steff

Yes, I think so. That's been my experience.

I'd take a LOT of B12, though... and if it's by means of the sublinguals it can do some damage to teeth... I found. :(

(now I'd rinse with a mouthwash fifteen minutes or so after each)

The other thing I'd do is use Epsom salts compresses and baths... The Epsom salts can help eliminate the toxins...

((((((((Steff)))))))))

Steff think of 'nerves'
 

like one sees 'plants roots'. You take out a potted plant it's got lots and lots and more fibres running to the main plant...then they branch off and get smaller. Those roots are similar to nerves.
Now for whatever reason...say take a blow-torch, dip in poison or just chop off some portion of those plant roots...there...you have what neuropathy is all about...dead or no longer existing 'roots'! Nerves because there are soo many and such a lot of nerve 'branches' can DIE very quickly. When the body's 'world is right' for them to regrow each nerve ending regrows [they guess...THEY being the 'scientists'] at about 1/4" each each month. You get nerve damage to the extent we have and well, you have MILES of nerves to regrow! That isn't going to happen overnite [and, believe ME! I want it NOW!?] It takes years. This is a patience thing, a way to change your life to make sure things happen and happen the best way YOU can make things happen - IF they are to be.
Now I for one do not LIKE to have to be patient. This tho is a thing one has to BE when having any type of neuropathy. Sometimes, damage can be reversed. At other times, not. This as well goes with the 'luck' of being diagnosed treated and getting the right therapies. I suggest you read David/Wings44 posts and others in the stickies. Since there are over 200+ and growing types of neuropathies and at least 20+ CIDP's this can get squirrelley in terms of diagnosing and treatments. Getting into YOUR mind, what all has happened in your life up to this point, what all has been done and then checking out LizaJane's worksheets...a beautiful 'roadmap' of options and some the the stickies can help YOU determine where YOU feel YOUR tests, etc should go.
And you better believe it, LUCK or 'accident of fate' often has a good deal to do with it.. Putting yourself in a place or path of such good events is up to you! Hugs and relief is what I wish for you soon! - j

PS do NOT browbeat yourself about anything you mite have done wrong before now? Just go forward and get stuff done!

When you say you take 'a lot' of B12, how much is 'a lot' if you don't mind me asking? I take 5mg a day,would there be any advantage to taking more?

Probably not, but there are some who benefit from larger doses.

Most, if not all, in going down the throat anyway. I would chew or swallow them.

rose

Dahlak,
That explanation of the nerve root system is the best I have ever read, easy to read and understand. I hope you don't mind me printing a copy as there is one particular doctor who needs to read it.

Stagger, USE away...
 

but just keep my name per-se out of it?
I Learned all this from lots of docs, the analogy to plants is my one concoction. It's just that Docs, would tend to 'adopt' this concept as their own? By being anonymous this way we can see WHICH professional...takes it as their own? HA.
I have read all [it seems] zillions of 'sources' about nerve re-growth mostly relating to LARGE fibre regeneration.. with a heap of stuff 'implied' regarding other nerve levels...all is 'implied' nothing documented or on solid record. It appears to be that death and regeneration for the most part is merely 'assumed'. Sad but true. [This is NOT just from/by/for PN nerve research - I assure you].

As I said, IF you want references to bring up...Lemme know. I can probably find you those sites [all truly legit, mind you] having any specifics.
Keep at it yourself? - j

Healed Myelin..
 

I went in to see my neurologist in the spring and he redid the tests (emg., etc.) that gave him the diagnosis of CIDP... He said that the tests showed vast improvement... When I asked him how much, like 75% or 80%, he said more like 80% to 90% improvement...

Unlike others, I have not taken the usual prescribed treatments... By the time I got the diagnosis and was thinking about which treatment would be best, I thought I noticed an improvement in my strength (about 2 months after the onset) and decided to forego treatment and see what would happen... I went back in about 2 months and was already beginning to climb stairs (albeit, holding onto something and very slowly) but had continual pins and needles in my hands... He prescribed gabapentin and that worked... Now I only get them when I am typing, etc...

I still have many of the sensory residuals going on....pins and needles, can stand for only a few minutes, balance issues, creepy crawlies up and down my back, muscle spasms, and fatigue, but at least my strength is back... I am not sure why I have these residuals if the myelin is so much healed... I guess it must be axonal damage or the myelin is not healed correctly (onion bulbs? in some of the literature)... I must ask him the next time I go in... He makes my appointments 6 months apart, but I go in more often if there is something going on or if I think I am relapsing... I have not had a "for sure" relapse, ie. not being able to climb stairs, squeeze a clothespin, etc., but just times when I felt weaker or have more neuro residuals bothering me...

I think I am getting "used to" the residuals... :( Is that possible..???

Aimee

Wow, aimee, that's very interesting.

I didn't know the thing about losing strength. It was so interesting to read that.

That's what happened to me when I had tetanus. I could not believe it, it was so total. People handed me things and they'd drop to the floor because I wasn't strong enough to hold them any more....

Thank you so much for posting.

In terms of your creepy crawlies and the pins and needles, I would guess that if you started taking methylcobalamin to replace B12 that you've lost, that you would experience the kind of improvement you are hoping for...

:)

Hi Mark, I'm sorry I've been overwhelmed with court things and unable to sleep and unable, therefore, to keep up here on the forum.

In terms of how much I take, I use cyanocobalamin shots, and I have one most days, because most days I start to have increased symptoms of low B12, like nose bleeds, or numbness, or feeling depressed... I have lists of symptoms on my website; the symptoms are not the same for everyone.

The amount I have, therefore (you can tell I've just been writing legal stuff) is similar to having 6 of the 5mg lozenges a day.

It was only when I began having that amount, and sometimes twice that much, that I had my peripheral neuropathy that had been SOOOOO painful go away, and I could sleep on a regular mattress again instead of always having to buy air mattresses.

I've been having B12 replacement for a little over ten years... but it wasn't until I had the highly increased amount that the vast improvement in peripheral neuropathy took place.

If I were you and I could get my doctor to give me a prescription for shots, I'd go that route because it would be MUCH less costly than sublingual methylcobalamin.

If you use the sublingual methylcobalamin, be sure to brush your teeth more or use mouthwash... not surprisingly I had some cavity problems due to using the sublinguals repeatedly during the day and before I went to sleep at night.

I'm very interested to hear how things go for you. :)

.

something nice
 

I found something very nice - please look at it

http://staff.jccc.net/aalarabi/axonanim.html

another one
 

Oh wow, is that cool? or what?

I love it.

Thank you!!!!!!!

Wow, very interesting. Thank you.

I loved the mention of Schwann cells, (Not that I'm way familiar with them.)

It's just that in the thing I did about pain and calcium, on my web site, I used an article that talked about Schwann cells, and that article helped me get to where I am, which is pretty much pain free.

So, I love your contribution.

Thank you.

Hi Rose
 

I read somewhere a while ago that in japan they give up to 35mg of methyl B12 injections to people with neuropathy,I couldn't find much information as to what it did or whether it helped. Do you think taking that much orally may make a difference? Using Jarrow's 5mg would be very expensive but a company called AOR do a 15mg methyl b12 tablet....just a thought

Hi, I don't know if you've looked at my site at all, but apparently in Japan the low for B12 is 550, where as here in the states it is often as low as 180.

I've never heard of AOR, do you know where they are located. Certainly a higher dose per lozenge would be good.

:)

I just Googled it, and boy it's expensive. I'm not sure why AOR thinks its prices are reasonable.

Still haven't found where the company is located, though.

****

I see, I found it in Canada and Great Britain.

I don't know... when I was going to get Methylcobalamin made up so I could give it away to people under stress, like after Katrina, I found that the basic methylcobalamin is really cheap. (I wasn't able to do that because of the problem with my condo, now in Appeal.)

And as far as I know it's all basically manufactured in the same places; what varies in vitamin lozenges is the purity or quality control on the amount included.

I know that when I lived in London many things were very much more costly than here in the U.S.

If I had a choice, I think I'd buy the less costly product since I think both Jarrow and Source Naturals have certificates relating to the purity...
.

Steff....
 

GOOD STUFF! Am adding to my 'collections'!
Looks like you have been doing lots of late nite reading - amazing where it takes you, isn't it?
Good thoughts and :hug: - j

hey-i cannot take the credit!
 

someone else did the research.
steff

Steff, Thanks...THANKS
 

TO RINA!

I think I'll try to find a toe to massage or something?

Still, good stuff! - j

Dahlek
 

It is not a late night research - I leave on the other side of the globe...

thanks ...

I bought a multi vitamin last year from AOR called 'ortho core', everyone was raving about it on a vitamin forum, it was a good product but really expensive so I only took it for a month. I think the company produce good quality supplements.

You are right about london being expensive, supplements bought in the UK are way too expensive, jarrow's methyl b12 is about 4 times more expensive than iherb charge.

I went to my local chemist today and mentioned to the Pharmacist that I was taking 5mg of methyl b12 a day and she said that 5mg was a very large dose and that it is not a good idea to take large doses of any kind of vitamin as it can be quite bad for you. Now im stuck as to whether to carry on taking the b12 or not...

The pharmacist wouldn't know what day it is, what ever the body doesn't use it gets rid of it, i wouldn't be worried if i took 60 mg of it per day.

Brian :)

Hi Mark, there's no research showing that B12 is damaging in high doses. That's because we excrete what our bodies don't use.

I had a pharmacist tell me to get a test to see if I had tetanus, and I did that and it caused so much trouble because there is not test to detect it, the test is to decided if you need a shot or not... but my doctor, after the results were in said the test showed I didn't have tetanus... which led to months of big fear and much pain, and I think that's why I'm still so debilitated today.

If you take notes on how the 5mg of methylcobalamin affect you, day to day, then you will be able to tell, in a few weeks as you look back, whether it has helped or not.

The stress of worrying about it may reduce the amount of it that gets to benefit you... please don't worry. Go to my site and read the research at the bottom of the page, that should be reassuring.

Are you in London, then? I lived on Sudeley Street by the Canal, near the Angel, and then on Goswell Road... which was a trip.

:)

:)

(you've uplifted my spirits. I'm having such a hard job going back to work on my appeal, because yesterday it became obvious that the judge ignored the law to decided against me and give my condo to the Realtor. He did that because the head judge had refused to accommodate my disability, so to keep him from having my cases I filed suit in federal court under the ADA, Title II. It's authorised to be able to do that in the law itself. But that infuriated the judges. It did protect me from him, though, and he'd said at a hearing that be would see to it I paid all I owed, without saying anything about the other party, who was the one which owed me under the Condominium Act, paying what they owed. So I'm freaked again... which makes it so hard to do this monumental work required in revising my brief. Maybe if I think about you, rather than the corruption of judges, I will be able to keep smiling, as I am now, and do it.) :)

Hi there, well I believe what you and the others say more than what the pharmacists tell me :-) the methyl did seem to do something in the first few weeks but im not sure if its doing much now as I am still getting symptoms but I will continue to take it. I am still a bit stuck on whether a standard strength b-complex is sufficient to balance out such a high amounr of b12, any strength higher (ie b-50) seems to cause more tingling in my feet for some reason.

Yes I live in central london, I have friends who live in angel, how long did you live in london for?

Oh, I think the B complex works ... that's a good thing to think about, though.

I take a lot less B complex than B12, but I do indeed take a complex... but mainly because it gets rid of my allergies.

Hmmm. I don't know about the complex causing tingling... I would be more inclined to think that if you were able to take more methylcobalamin the tingling would go away (more rapidly).

You live in London? Wow.

I lived there for nine years. What a beautiful city. I mean, really beautiful.

:)

You don't happen to remember the name of that famous old judge, the chief judge at the Royal Courts of Justice, do you?

I've been trying to remember. I used to go and hear/watch him sometimes. And when the Sunday Times was there with Slater/Walker, the book they were doing the investigative journalism for, I got to eat lunch next to the head barrister who was trying to keep them from publishing, that was at Lincoln Inn.

But I bet you're too young to remember Slater Walker. :)

No sorry I don't remember the name of the judge. I think the tingling in my hands and feet and all my other symptoms are toxic related, im not sure if taking more than 5mg of b12 will make much difference, does b12 do much to improve your nervous system even if you are not b12 deficient?

What toxin?

I lived in hydrogen sulfide for a couple years and the neurologist I was seeing said that B12 couldn't help with that.

I sort of believed him.

But then when I had tetanus and I had SO MANY B12 shots because I didn't have anything else to help me, it made my peripheral neuropathy go away.

And now I don't bump into things the way I used to, and my memory is better. Not like it used to be, but it is better.

I would for sure take the higher dose of B12 if I were you, or if I had it to do over. I sure wish I hadn't believed that B12 couldn't help me recover from the hydrogen sulfide. (There were other toxins, too, from different things, but the hydrogen sulfide is probably indigative of all toxins that affect the nerves.)

Its not one of the toxins that is listed as being a known cause of neuropathy, my neurologist said that there were a few known cases but basically it is extremely rare for it to cause neuropathy. But I am 95% sure it did.

Oh, well I'm sure you are right.

I mean, really sure.

I would take the most B12 you can afford for at least three months... it was three months of the Big Amounts of B12 before I had to admit that my peripheral neuropathy was just about totally gone.

(((((((((Mark))))))))
.

The point is--
 

--methylcobalamin has been shown to be particularly neuroprotective; it is involved in many of the enzymatic reactions that allow fatty acids to be formed into myelin sheathing. It also may be protective of the biology of the nerve fibers--the axons--themselves.

B12 is not the only vitamin in the B family that is needed for proper nerve functioning--deficiencies of B1 (thiamine), B2 (riboflavin), B3 (niacin), and B6 (pyridoxine) have also been associated with peripheral nerve dysfunction, so a good B-complex is indicated, although one wants to limit megadosing of B6, which can also cause neuropathic symptoms in some people.

Many of us with neuropathies, but without known B vitamin deficiencies, nevertheless think it prudent to take considerably greater doses of B-vitamins than delineated in the USDA minimums; it just makes sense that those with nerve damage, from whatever source, need considerably greater amounts of them for maintenance/repair.

Mark, if you get lessoning of symptoms whilst taken Methlycobalamin that fantastic, but if its repairing the damaged nerves its common to get flaring of symptoms, i found that the flaring were only short periods [they were not really terrible either] but the normal symptoms can persist for a long time but gradually over months the symptoms can get slightly less after some flaring.

Have you had a test for your b12 levels ? but anyway 5mg is a good amount to take, it will NOT hurt you, your body will store what it needs and get rid of any excess, overseas they treat PN with massive amounts per day, its a shame really that some so called medical people don't know nothing about B12 Methylcobalamin supplements, use a good multi B too but don't take it at the same time, its works better that way, if you haven't read Roses site about B12, here is the site - http://roseannster.googlepages.com/home
well worth reading,
good luck with it all anyway,
Brian :)

Hi, I am taking a normal B-complex, its not particularly strong, I also bought some jarrow formula's B-right from iherb but as I said in earlier post it seems to make the tingling im my feet worse and I was only taking 1 a day, no-one can quite understand how it would do that but I also had the same problem a while back trying a b-100 complex. The normal strength b-complex that I am taking at the moment only has 10mg of b6 , the b-right has 25 mg of b6 + 10 mg of b6 p5p so maybe its that,that is causing the intensified tingling sensations... I am not sure if I am getting enough b vitamins through the normal b-complex ,I guess the only way to get more is to buy each b vitamin separately,avoiding any high dose of b6 unless any other b vitamin could be the cause...

Hi Brian, its all very strange and I am still trying to work out why when I start getting weird sensations in my arm, then why does it also come on in my face at exactly the same time,and my back also feels more numb,it makes no sense. I did start to get less symptoms a few weeks after starting the b12 but now its sort of coming back,I hope it is just a flare up whilst the nerves are repairing,it would be interesting to know the largest amount of b12 taking by anyone in any one day. Like I say in reply to glenn I am not sure if I am taking a strong enough b complex, I really want to take stronger but without too much b6 I guess...

I did have a b12 test,it was in normal range but as of yet I haven't got the exact figure...

Hi Mark,
I don't think it's useful to think about what the largest amount is that was taken by some person in one day.

What's important is finding the right amount for you to be taking.

If you take additional lozenges when you get the symptoms, do they reduce or go away?

That is what would interest me... I'd like to know that.

:)

I hope you are keeping notes of your symptoms, day by day, and not trusting it to your memory...
.

You know what, that image came to mind when I was falling asleep last night. I loved it. The little nerves growing, it was a lovely image to fall asleep to.

Thanks.

(I just wish I'd been able to fall asleep earlier and sleep longer. It irritates me that I am so affected by the stress of the appeal on my condo.)

Brian
 

[QUOTE=Brian;145219]
its a shame really that some so called medical people don't know nothing about B12 Methylcobalamin supplements, use a good multi B too but don't take it at the same time, its works better that way,

Why shouldn't we take the complex B and the Methylcobalamin together?

I read somewhere once that you shouldn't have a B12 shot and a B12 lozenge at the same time...

and I was so careful for the longest time.

But now, I've never been able to detect that to be true...
(true is obviously not the right word - I've failed to go to sleep)

[QUOTE=rina;145374]Hi Rina, Rose could explain it a lot better than i, but what i understand is, when taken it by itself your body hasn't got all that other B vitamins to contend with to metabolize and do its job as well as the B12 too, so taken the b12 by itself at a differant time should give your system an easier job to absorb the vitamin better.
I normally take my Multi B with breakfast, then at lunch i take my b12, its whatever suits the individual though really.
Brian :)

I will probably try taking 10mg instead of 5mg for a few days and see what happens Karen.Would you know if it is better to take each tablet at a different time or both together? :-)