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Old 07-23-2008, 03:07 PM #31
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Wink Where is this sticky?

Hi, I'm new to the forum. I have idiopathic peripheral polyneuropathy for 1.5 years now with worsening nerve conduction tests. Also other fun symptoms. I've had the MRI/CT scan, spinal tap, muscle biopsy, lip biopsy (that was a lot of fun and now a nerve biopsy from which I am (hopefully) recovering. One of the replies below mentions a protocol on page 2 or 3 of the stickies that has perhaps contributed to some recoveries.... this sounds interesting and worth trying. I found the stickies but cannot find the article - can anyone advise? As you can probably tell I have never been on a forum before, mind you I've never had a significant medical or other problem before!
Thanks, look forward to hearing from you.
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Old 09-14-2008, 11:19 AM #32
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Default lost newbie found stickies!

Hi Judy! You're in the stickies. The stickies are subjects of such importance that they're 'stuck' at the top of the board so everyone can always get to them. Go back to the main page of PN and the very first 3 topics are stickies. The one you want is the second topic. That contains a lot of info about different types of treatments and supplements, vitamins and other things that have helped people with PN.

Just to make sure you get there in one piece...
Also, notice at the beginning of a topic it says stickie?

thanks Jarret, I wasn't quite sure where the stickies were either. I can't believe I found this site that has many different opinions & suggestions about PN. I've been in pain for about 4 yrs now, on my feet every day, and by time I get home, just want to put feet up to rest.
Frank
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Old 09-16-2008, 04:18 PM #33
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Originally Posted by fb123 View Post
Hi Judy! You're in the stickies. The stickies are subjects of such importance that they're 'stuck' at the top of the board so everyone can always get to them. Go back to the main page of PN and the very first 3 topics are stickies. The one you want is the second topic. That contains a lot of info about different types of treatments and supplements, vitamins and other things that have helped people with PN.

Just to make sure you get there in one piece...
Also, notice at the beginning of a topic it says stickie?

thanks Jarret, I wasn't quite sure where the stickies were either. I can't believe I found this site that has many different opinions & suggestions about PN. I've been in pain for about 4 yrs now, on my feet every day, and by time I get home, just want to put feet up to rest.
Frank
I searched for some time before I 'stumbled' onto this site. Mostly late at night because my feet were killing me and I couldn't sleep. Boy things sure have changed for me since coming here!

Barbara
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Old 09-17-2008, 09:33 PM #34
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Just came back here on a whim. Remember me? My nick on the old board was SteveInTrouble.

Burning flesh, couldn't wear clothes, radiating nerve pain, yadda yadda. Dx of small-fiber neuropathy.

All gone. It was a huge amount of work. And expense. But most days I don't even remember I had it.

I credit the info I found here, and on the TOS forum. Thanks all--and good luck!
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Old 09-17-2008, 11:38 PM #35
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Just came back here on a whim. Remember me? My nick on the old board was SteveInTrouble.

Burning flesh, couldn't wear clothes, radiating nerve pain, yadda yadda. Dx of small-fiber neuropathy.

All gone. It was a huge amount of work. And expense. But most days I don't even remember I had it.

I credit the info I found here, and on the TOS forum. Thanks all--and good luck!
That's incredible and so wonderful!!! I have days where I feel like giving up. I have days that are so miserable when I contemplate living the rest of my life like this and will it get worse, better, what?? It *really* helps to see these kinds of posts.
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Old 10-07-2008, 12:24 AM #36
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Default where are the stickies? i'd like to see liza jane's list of supplements

i can't find the stickies that have lize jane's list of supplements. how do i get to it?
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Old 10-08-2008, 08:49 AM #37
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i can't find the stickies that have lize jane's list of supplements. how do i get to it?
scroll back on THIS thread to page 2, and find post #19.
The post numbers are in the upper right hand corner of each
post.

Your post on this thread asking the question is # 36
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Old 10-30-2008, 12:32 AM #38
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Default supplements for PN

I just stumbled on to this site yesterday and am so excited at, what seems like, the first real hope for my sometimes unbearable pain. I am up to 1500 mg. of Neuronton with only minimal relief. Before giving my PN story, can I just cut to the chase and ask for a complete list of the supplements you take? What dosages do you recommend? And at what times of day? With or without meals? Have you or anyone else written up a supplement plan that works? Thanks in advance for someone's, hopefully, speedy response.

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Originally Posted by LizaJane View Post
My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.
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Old 10-30-2008, 07:49 AM #39
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Lightbulb there is no one recipe

for supplements (non drug interventions) that will work equally for everyone.

The causes of PN are many. And people all vary in diet and metabolism, and genetic details.

There is a trend showing however that drugs and some toxins may poison mitochondria, so that using supplements that target them, may help.

But there are vitamin deficiencies due to disease (pernicious anemia), or drug use (use of acid lowering drugs), genetic inheritance of genetic errors that then necessitate higher doses (B6, folate), malabsorption due to gluten, fructose intolerances, or Candida infection. There are diseases like insulin resistance, diabetes, hypothyroidsim, that contribute to PN.

So it becomes a complex issue, and a recipe cannot be crafted to fit all people. Each needs special consideration.
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Old 12-01-2008, 12:08 PM #40
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Default Advice please to treat my PN

Any advice on how to heal them? I have had idiopathic small fibre PN for 13years. I am still getting relapses and 5 neurologists do not know what to do including one in the US. I live in the UK. Any advice would be very much appreciated. tony13


Quote:
Originally Posted by LizaJane View Post
My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.
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