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Old 03-21-2007, 10:58 PM #1
mommab mommab is offline
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Default peripheral neuropathy

Hello, just registered for this forum. Hello there. I have Peripheral neuropathy, probably caused by gluten intolerence and wondered whether or not anyone else has gluten induced neuropathy. And if so, did going totally gluten free help?
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Old 03-21-2007, 11:19 PM #2
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hi and welcome-

You might post on both of these for the most replies.

Gluten Sensitivity / Celiac Disease
http://neurotalk.psychcentral.com/forumdisplay.php?f=13
Peripheral Neuropathy
http://neurotalk.psychcentral.com/forumdisplay.php?f=20
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Old 09-05-2010, 12:07 PM #3
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Default not getting anwsers

i have had a seizure conduction from 9 yrs old. i had a nerve conduction test done on one arm because on shooting/stabbing pain as well as tingling. the dr keep leaving the room then did i repeat test on the other arm and said that i have ph (polyneuropathy). so, i did some checking on the web and found that Dilation is a direct cause; which i took for years

well unbeknown to me the neuro dr. classified me as idiopathic (whatever that really means).what i am having a hard time swolling in lu of the fact of the dilation. i am fighting to get more tests but a feel that i mizon bang my head against the wall as of yet. o and first the nortiptyline then the gabapentin caused me to go into withdraws and my seizures to come back after 15 + yrs.

i take any thoughts you have
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Old 09-05-2010, 01:43 PM #4
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Quote:
Originally Posted by frustated View Post
i have had a seizure conduction from 9 yrs old. i had a nerve conduction test done on one arm because on shooting/stabbing pain as well as tingling. the dr keep leaving the room then did i repeat test on the other arm and said that i have ph (polyneuropathy). so, i did some checking on the web and found that Dilation is a direct cause; which i took for years

well unbeknown to me the neuro dr. classified me as idiopathic (whatever that really means).what i am having a hard time swolling in lu of the fact of the dilation. i am fighting to get more tests but a feel that i mizon bang my head against the wall as of yet. o and first the nortiptyline then the gabapentin caused me to go into withdraws and my seizures to come back after 15 + yrs.

i take any thoughts you have
Hi, "frustrated"! I looked up "idiopathic" and discovered that it means "having no known cause." So, I understand that you're frustrated in that you read that dilantin can be a cause of it. Did you mention your finding to the doctor?

I am particularly interested in the long-term effects of some of these drugs on the nervous system. I am bipolar, but doctors give us a lot of drugs for epilepsy to deal with that. I was having trouble with walking, and my primary care doctor thought it might be due to my taking a high dosage of Lamictal over the years, so she took me off of that. I have also been on lots of other drugs--Dilantin, though, hasn't been one of them. Depakote was a big one.

I frankly don't think doctors want to acknowledge that these powerful drugs can damage our nervous systems. We know about tardive dyskinesia, which can be caused by anti-psychotic drugs. But I don't know how much research has been done on drugs to prevent epileptic seizures. But I can't help believing that they take a toll on our nerves.

In fact, I've been worried about staying on some of these drugs. I am now on Trileptal, due to facial pain. But I'm not on any anti-seizure drugs. I was having facial twitching.....Please let me know if you find out anything else.

Meanwhile, hang in there. I guess, as usual, the doctors have to experiment on us to see what drugs work the best for us.
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Old 09-05-2010, 01:49 PM #5
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Default Hello frustated.....

Quote:
Originally Posted by frustated View Post
i have had a seizure conduction from 9 yrs old. i had a nerve conduction test done on one arm because on shooting/stabbing pain as well as tingling. the dr keep leaving the room then did i repeat test on the other arm and said that i have ph (polyneuropathy). so, i did some checking on the web and found that Dilation is a direct cause; which i took for years

well unbeknown to me the neuro dr. classified me as idiopathic (whatever that really means).what i am having a hard time swolling in lu of the fact of the dilation. i am fighting to get more tests but a feel that i mizon bang my head against the wall as of yet. o and first the nortiptyline then the gabapentin caused me to go into withdraws and my seizures to come back after 15 + yrs.

i take any thoughts you have
Just wanted to Welcome you to NT - you've found a goldmine of info and support, especially in regards to neuropathies.......
I'm sorry of the battle you face and lack of answers you are receiving.....

Here is a direct link that will take you to the very active Peripheral Neuropathy Forum here at NT, click on:

http://neurotalk.psychcentral.com/fo...aysprune=&f=20

You may benefit greatly from the section at the top of the page there, called PN, Tips, Resources, etc........you can gain much info from there.
You maybe should start a new thread at the PN forum, as your post here is tagged on to a thread that is 3 yrs old and I was afraid it may not be seen by many.....

Good Luck to you and
Hang in there
Rae
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Old 09-05-2010, 03:17 PM #6
frustated frustated is offline
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Quote:
Originally Posted by PAYNE1 View Post
Hi, "frustrated"! I looked up "idiopathic" and discovered that it means "having no known cause." So, I understand that you're frustrated in that you read that dilantin can be a cause of it. Did you mention your finding to the doctor?

I am particularly interested in the long-term effects of some of these drugs on the nervous system. I am bipolar, but doctors give us a lot of drugs for epilepsy to deal with that. I was having trouble with walking, and my primary care doctor thought it might be due to my taking a high dosage of Lamictal over the years, so she took me off of that. I have also been on lots of other drugs--Dilantin, though, hasn't been one of them. Depakote was a big one.

I frankly don't think doctors want to acknowledge that these powerful drugs can damage our nervous systems. We know about tardive dyskinesia, which can be caused by anti-psychotic drugs. But I don't know how much research has been done on drugs to prevent epileptic seizures. But I can't help believing that they take a toll on our nerves.

In fact, I've been worried about staying on some of these drugs. I am now on Trileptal, due to facial pain. But I'm not on any anti-seizure drugs. I was having facial twitching.....Please let me know if you find out anything else.

Meanwhile, hang in there. I guess, as usual, the doctors have to experiment on us to see what drugs work the best for us.
to payne1
i am new at this but, to try to go over some of your questions from what i can find out.
yes i told the Dr. and he was a little calist to it. i agree with you about the effects that's why i just as soon put you with the pain (systems) i.e. i quit taking the pain meds. they wanted me to take. i been first on dilantin (9)yrs; then tegretol/dilantin ; then tegretol/depakote and now just the depakote.

you said something about facial twitching; when i had seizures i had them all one of is focal seizures . i am convensed that one or both of the pain drugs induced me to have focal seizures to have that happen after 15 yrs is pretty scary. if you havent all ready get on your friendly computer and look up everything you can. i know all about being a geany pig from back in the day of my seizures.
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