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)))))))))

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.

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

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.

.