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Old 11-11-2009, 08:39 PM #1
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Hi everyone,

Just wondering...I have mild PN have had it now for about 2.5 years. My doc says its caused by the epilepsy and that it will get worse (I also have diabetes).

I've noticed in the last week more shocks of pain and burning in one foot, and much more prolonged tingles, numbness and pain in my left hand. How does this thing develop and how rapdily can it hit?

Is there such a thing as a PN "Attack" where it's bad for a few days then recedes?

I know I had less feeling in my feet and on one leg during the most recent diabetic review, but I am trying to seperate what is caused by the epilepsy and what is caused by the diabetes...

I'ts just too hard for the doc to explain because every time I ask him he frowns and says "it's complicated" (which means it would take up more than the obligatory less than 7 minutes in the consulting room which makes him $300 an hour instead of $200 an hour lol).

Any input gratefully received and appreciated,

Rhiannon
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Old 11-12-2009, 04:53 AM #2
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Many epilepsy treatments use drugs that deplete Calcium and Folic acid. Supplementing folate in high doses may inactivate the seizure control. Hence some patients may develop osteoporosis.

You should discuss with your doctor if taking Vit D (get tested), some calcium and a modest dose of folic acid can help you.
Low Vit D is very common in US...about 1/2 of the population has low levels, and this impacts Calcium absorption. Doctors are now testing for this.
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Old 11-12-2009, 01:19 PM #3
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Mrs. D, my grandson was diagnosed with Tourettes Syndrome yesterday, he has uncontrolable blinking and an arm jerk. Would it be safe to say he could benefit from these same supplements as used for epilepsy? What can we make of the the autoimmune in the family? My grandson survived AML Leukemia, his mom developed Graves Disease, now her youngest son has Tourrettes, my husband has Rheumatoid, and I of course have idiopathic PN as well as Rheumatoid. I'm getting paranoid about my well water and whatever else could be causing all this? We also were in the northern jet stream when they were nuclear testing in Nevada and then winter jet stream when Chernobyl happened in Russia. My family members think I'm crazy...and of course maybe I am! We have no family histories of anything but thyroid problems, it just baffles me to no end.
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Old 11-12-2009, 01:58 PM #4
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I think another good source for Tourette's supplements is Latitudes.org

We have a sticky here on our board :
http://neurotalk.psychcentral.com/thread1145.html

Chemar, our admin here, has used supplements for her own family's Tourette's issues very successfully.

With all that autoimmune history, I'd investigate Gluten intolerance, too.
http://jccglutenfree.googlepages.com/

This is our gluten forum:
http://neurotalk.psychcentral.com/fo...aysprune=&f=13

The first post on that page is about Seizures. You may find that interesting.
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Last edited by mrsD; 11-12-2009 at 02:17 PM.
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Old 11-13-2009, 09:14 AM #5
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Quote:
Originally Posted by RhiannonsMoon View Post
.......Is there such a thing as a PN "Attack" where it's bad for a few days then recedes? ...........
Yes.
It is commonly referred to, as 'flares' and can last anywhere from a few seconds, or minutes, or hours, or days,...... or weeks.
Everyone with PN is different and it affects us differently.
We have similarities in common, but each of us reacts differently to meds, treatments & supplements. We also have a host of varying symptoms in common that may, or may not, happen to us.
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Old 11-13-2009, 03:31 PM #6
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Hi there

Personally I think you will drive yourself nuts trying to work out what is caused by epilepsy and what is caused by diabetes, and at the end of the day you will likely never really know.

The other way of looking at it is that you are lucky to know why you have it at all, so many people on this board have ideopathic PN and have no clues what caused their PN.

I have both epilepsy and lupus, my neuro tells me it is my lupus that caused by pn - I think because it is length dependent (I have sensory motor axonal neuropathy).

hope this helps
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