[Monica de Lara]

Hi everybody! I posted a while ago on this forum and i have returned because i can't get rid of some doubts.

I have a few questions about autoimmune neuropathies. Can they go into complete remission?? My doctor says mine can, but all i have read points to a no. So am i just being stuborn and should i believe my doctor?

My doctor had me take IVIG about two months ago.When he first talked about this treatment he said i would need an IVIG infussion every 3 months for about a year. Now he tells me it all depends on how i feel, and he said that if i feel symptoms are coming back then i should get another round of IVIG. The problem is that after the IVIG was administered i have been feeling some different sensations, like vibrations, but very located along the nerve, and some tingling in my feet. I also get cramps everytime i stretch my feet, also i feel some stifness along my nerves once in a while. So i really don't know what to think. Doctor says these are healing sensations. And i beleive so, but some sensations are similar to the ones i had before IVIG, so should i interpret this as my nerves are still being attacked?. Do you think i should get an other IVIG infussion?? Is there a mmore objective way, other than what i feel, to find out if my nerves are still being attacked??

An other doubt i have is: How can i know if my immune system is back to normal?

Currently i am on prednisone, imuran and novotiral for a thyroid problem i have. I was reading some people's posts regarding to magnesium. I would like to give it a try, but do you think that if i go on magnesium it will be too much for my body?? Should i tell my doctor or i should just take it without telling him. I have realized he gets sort of upset whenever i tell him "i read on internet that....", so i don't really would like to tell him again, "i read about magnesium..." What do you think???

Well thank you guys. I will try to be around more often

[MelodyL]

Are you taking Methyl B-12?

It absolutely turned my neuropathy around. I'm diabetic, and I had the pins needles, burning, all the time.

Now my problems have been reduced a good 60 to 75 %.

I can sit for longer periods without the burning.
And some days, I have absolutely no symptoms whatsoever.

And all this happened since I'm on the Methyl B-12.

I get it from iherb.com and I take 5000 each morning under my tongue.

My husband Alan who also has neuropathy and is undergoing IVIG, saw my improvement and now he takes it too.

Give it some thought, and do a search on these boards for Methyl B-12.

You'll be amazed.

Good luck.

Melody

[rose]

Lots of good information on nutrients and related subjects on the vitamin deficiency forum. Our MrsD has posted excellent information about magnesium and some others. She knows her stuff.

B12 is my area of study, and although you may or may not benefit from B12, chances are you will to some degree or another in light of your symptoms and history.

Best wishes,

rose

[dahlek]

But, HOW WELL you get treated is going to depend totally on how HONEST you are to him about how you feel! As you have read in prior posts, describing pain[s], is often a very difficult and diverse THING.

As for the 'different' sensations one feels after an IVIG, well, I can say that I DO feel things differently in the before/after way I FEEL.. But explaining it all is well, hard, very very hard!

From all that I've read, and learned, there is a LOT of research about HOW nerves die, why they do so and what all happens during the process. There's a teeny bit about HOW NERVES REGROW! Most is related to spinal damaged nerve regeneration...nothing about those 'pesky' peripheral nerves... Based on all I have read, the 'assumptions' are that the 'nerves' re-grow but in some reverse process? But, my experience is that what re-growth is not as consistent nor diagramitically progressive as one would wish? That all MEANS: YOU are gonna get various and random zeeps, zaps, pains and spasms as your new nerves finally grow, connect and try to 'learn' WHAT AM I SUPPOSED TO DO?????? Thru all this, YOU the person with all these 'peculiar' 'sensations' has to say to the REST of YOU, UM BODY, CHILL? Then, worse yet, you have to keep up with exercise, and walking and pretending to do 'normal' things to keep the new or re-programming...in program mode.
OH, Did I mention the fact that ONE shouldn't PANIC during such 'episodes'?
OK about the supplements - be they vitamin or mineral.....your system overall has been well COMPROMISED. By providing the better/best vitamin, mineral and diet environment one could possibly have...it makes sense to help your body and your entire system heal thru giving it all the better stuff it needs...You have had some kind of assault [internally] to your body, so IF you can give it as much help as you can [and cheaply] aside from diet, do it...What can it hurt?
I too have/am going thru a thyroid 'issue/condition' diagnosis process...What's been helping me has been the supplements...so far.. We shall see for the longer run of things.
Just don't panic, look at all that's going on with you and try, ask about possible solutions. Some folks' solutions may not be what you need, but being INFORMED is what you need to be to ASK the docs the rite questions to GET what YOU NEED done! It takes lots of work for you to find your own combination of possible solutions.. I'm there for you tho.. [even tho my own situation is probably different {very} from yours]...I can probably point you to sites that may help you make up your mind about different issues. 's - j

[rose]

Peripheral nerve regeneration doesn't seem to be the subject of a lot of literature. When looking for that a few years ago, I found that the best way to find information on peripheral nerve regeneration is to look at literature concerning spinal cord injury. Because peripheral nerves regenerate better, their use has been researched for years to help people with spinal cord injury.

Strange sensations do often go along with healing nerves. I hope your doc is correct.

rose

[glenntaj]

--it certainly possible for CERTAIN autoimmune neuropathies to go into remission, especially some, like Guillain Barre syndrome, that have an actue onset. A large number of people recover from such syndromes, though often they have some residual permanent damage, due to the fact that myelin sheathing and/or nerve fibers don't regenerate in the same pattern they were in before the syndrome.

There are also certain neuropathy, such as chronic inflammatory demyelinating polyneuroapthy (CIDP) that have a relapsing-remitting course as part of their identifying description, similar to certain forms of multiple sclerosis.

Many (myself included) have reported that as nerves regenerate, they get all manner of odd sensations--pain, jabs, shocks, tingles, you name it--this seems to have something to do with the axoinal "growth cones" moving through other tissues to find thei rconeectin targets, but while doing so sensations are interpreted in all sorts of weird ways by the brain.

[Brian]

Besides all the other good advise that's already been given. i agree with Glen's regeneration statement 100 %, whilst my nerves were healing i found that some days it just felt like normal PN and other days i bad flare ups, but as the time went on the flareups become less often and less severe and at the same time the burning very slowly calmed down too, i think it's important to say that regeration can takes months or years depending on the amount of nerve damage, i was lucky as the cause was found early.

I wouldn't be worried one little bit about asking your neuro about anything that you are not sure of, remember your paying them to work for you, but if it makes you feel uncomfortable don't say anything about the net, just say something like " a friend of mine has similar ... has had a lot of relief taking, rar rar...... and what do you think about that in my case ?
anyway good luck with it all,

Brian

[Monica de Lara]

Thank you all for your information, it's been very useful. I would just like to ask you a few more questions.

Melody, i am glad Methyl B12 gave you relief, i will definetly give it a try, but which exactly is the prodcut i should order? i put "Methyl b12" on the search bar and a bunch of products came out, so which one exactly is it?? Does this product have any side effects?? As i said before, i am currently on a lot of meds and i wouldn't like to add more side effects to the ones i already have. Do you think i can have Methly B12 shipped to Mexico?? Thank you Melody!

To the rest of you thank you so much. i completely agree with you, very little information about nerve regenaration. I am one of those people who hate uncertainty, i guess we all do, but not knowing how long it will take for my nerves to grow back, if they do, just makes me feel out of control of my life.

Well there are a few questions i would still like to ask you. Do you think another round of IVIG? I don't have any insurance and as you must know it is too expensive. Do you think it is worth it?? The octor says it all depends on what i feel, that it is completely up to me. I used to think the doctor was the one to say what to or no to do. So, what do you think?? In case i decide to take another roun of IVIG, Should i do it soon? Or should i wait for my nerves to heal more??

Last question. The doctor told me I should do exercise to help my nerves heal, but i have read that exercising a lot can actually lead to nerve damage and that it is advisable to rest. So should o should i not do exercise. What type of exsercise do you recommend to avoid damaging my nerves??

Than you all! Greetings from Mexico!

[Brian]

Its B12 Methylcobalamin that Melody mentioned, it helps to repair damaged nerves, its the active form of b12, we can't buy the supplement form in Australia so its either take b12 Cynocobalamin supplements or shots of hydroxocobalamin, which will still does the job but takes longer to build up stores, the best one is Methylcobalamin if you can get your hands on it though.
You might like to look at http://roseannster.googlepages.com/

I am sure others will be along shortly to help you with IVIG.question.

[MelodyL]

Ola Monica!!!!

Here's where I buy my Methyl B-12

http://www.iherb.com/ProductDetails....1&pid=117&at=0

This is exactly what I take every morning!!!

Hope you can get this in Mexico!!

Adios

Melody