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Old 12-09-2008, 06:32 AM #41
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Can you help me - I am computer illiterate mostly. How do I find the page 2 stickies????
This sounds so important & encouraging!!!
Thanks!!!!!!!!!!
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Old 12-09-2008, 08:40 AM #42
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Lightbulb you found this post?

You were able to post on this thread?
This is a sticky.

When you clicked on it, you had the option of scrolling down
and READING what was posted here.
If you click the page numbers, that show in the lower right and upper right, you can move along.
You clicked Reply--- it is in the upper left.

I think you should READ here more.
And remember-- all people differ. It depends on what is causing your PN in making a choice as
to what supplements you may need.
Basically there are:
vitamin interventions -- like B12 and Thiamine, B6 and folate
mineral interventions-- magnesium (sometimes zinc), chromium
mitochondrial aids -- like acetyl carnitine, CoQ-10 and r-lipoic acid
anti-inflammatory--- curcumin, fish oil, vit C, other antioxidants
healing oils-- fish oil, flax oil, evening primrose

Drug induced PNs typically need the mitochondrial types
Diabetes induced PN typically needs vitamin and mineral interventions
any nerve damage especially axonal needs healing oils
autoimmune needs the anti-inflammatory agents

Some people need supplements from more than one group for relief.

This is a hint for people who are not confident on computers:
just click on things and see what happens.
To go back you hit the back icon at the top left of your screen.
Do not hit "home" if you don't want to leave here.
Once you do things you will learn faster. Doing is faster and longer
lasting learning than memorizing keystrokes.
This style board is pretty easy to navigate compared to others on the net.
You just have to practice!
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These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.

Last edited by mrsD; 12-09-2008 at 09:01 AM.
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"Thanks for this!" says:
armac (01-31-2009), Dious (07-04-2015), v5118lKftfk (04-13-2014)
Old 01-14-2009, 02:12 PM #43
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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.
ARMAC I was uplifted by your "healing" message...physically (heavy root pulling) caused my Neuropathy since August 2007.....no pain after 4/5months...both feet,both legs,left arm,hand/fingers all very numb but no pain or any other symptoms left face some numbness, right hand gradually numbing, no pain.....Planning to try CoQ10 (ubiquinol) and Acetyl L-Carnitine....wondering if there's been any success-feedback on removing Peripheral Numbness as the only Symptom (no Pain)
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Old 01-16-2009, 11:26 AM #44
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Default Supplements and reduction of Idiopathic PN Numbness?

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.
New to Neuro Talk (Dec 2008)..Inspiring to read Your "PN improvement description and your own success with it.

I'm wondering if the Supplements approach would reduce my Major Symptom..Numbness..NO Pain involved now,formerly Cervical (neck)Pain for first 5months..heavy numbness in Feet,Legs,Left Arm,Hands,Left Face, progressing...

Puts my PN in perspective when I read and consider what people are having to deal with...including Pain.

PN Physically Caused 1.5yrs ago by repetitive,Tugging Work..ie Non-diabetic,Non-disease non-Meds.,Diagnosed as Idiopathic PN..and left to get on with it (National Health Service UK)..oh,nearly forgot..was prescribed Anti-depressants....now stopped (because of side effects)

now..left with all this numbness, really bad Balance (and Fatigue from ME/CFS since childhood)...particularly exhausted at the moment......

but it is Numbness that is the real problem..unable to function normally..or work (Musician).

Can't find any info on this "Physically caused" PN..hoping the Supplements might be the way to go, first..

thanks for your Post....hope all is going well for you and that the Symptoms are still on the run......!!

Ray
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Old 01-18-2009, 05:26 PM #45
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Default what program?

i'm dealing with alot of stuff, apparently PN and AN or the biggest problems. i'm 28 feel physically out of wack and not getting anywhere. what program did you follow? i don't know where or what are stickies. i'm new to this.
-thanks

Quote:
Originally Posted by Wing42 View Post
in spite of a negative prognosis from three neurologists. I was in severe pain and burning for years, with loss of balance, foot drop causing frequent stumbles, no ankle reflex in left and 50% in right, and hardly able to walk. The pain ranged from 6-8 on the 0-10 scale with breakthrough pain at 9 or 10 experienced as either electric zaps, or feeling like a carnivorous worm was eating at my toe and metatarsal joints. I also had extremely hypersensitive skin, and other areas where the skin was numb enough to stick a pin in.

Now, I walk or hike an average of 12,000 steps a day on my pedometer, have wonderful balance (not as good as in 1992, but I'm 65 yrs old now). My pain ranges from 0 to 4 with very occasional breakthrough pain in the 6 or 7 range, about 2 now as I type this. Both ankle reflexes were measured at 100%. There are still some mildly numb skin areas, but almost no hypersensitivity. I still show some neuropathy when tested with two points, tickle, and vibration. EMGs and nerve conduction tests have always been normal since my PN was small fiber sensory.

OK, it's not healed, but I can happily go through the rest of my life like this. No longer does the pain wakes me up, stop me from walking or driving, and is never so bad that it's hard to concentrate.

The program I've followed all these years is on page 3 of the stickies. There have been changes to it the past couple of years, but the the essential program hasn't changed. It's a hassle to edit old postings on this forum, but I'll work with a moderator to do so one of these months.

A CHANGE: I meant page 2 of the stickies. The neuropathy must be affecting what remains of my brain.
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Old 01-22-2009, 05:09 PM #46
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Default Supplements and reduction of Idiopathic PN Numbness?

Quote:
Originally Posted by Wing42 View Post
in spite of a negative prognosis from three neurologists. I was in severe pain and burning for years, with loss of balance, foot drop causing frequent stumbles, no ankle reflex in left and 50% in right, and hardly able to walk. The pain ranged from 6-8 on the 0-10 scale with breakthrough pain at 9 or 10 experienced as either electric zaps, or feeling like a carnivorous worm was eating at my toe and metatarsal joints. I also had extremely hypersensitive skin, and other areas where the skin was numb enough to stick a pin in.

Now, I walk or hike an average of 12,000 steps a day on my pedometer, have wonderful balance (not as good as in 1992, but I'm 65 yrs old now). My pain ranges from 0 to 4 with very occasional breakthrough pain in the 6 or 7 range, about 2 now as I type this. Both ankle reflexes were measured at 100%. There are still some mildly numb skin areas, but almost no hypersensitivity. I still show some neuropathy when tested with two points, tickle, and vibration. EMGs and nerve conduction tests have always been normal since my PN was small fiber sensory.

OK, it's not healed, but I can happily go through the rest of my life like this. No longer does the pain wakes me up, stop me from walking or driving, and is never so bad that it's hard to concentrate.

The program I've followed all these years is on page 3 of the stickies. There have been changes to it the past couple of years, but the the essential program hasn't changed. It's a hassle to edit old postings on this forum, but I'll work with a moderator to do so one of these months.

A CHANGE: I meant page 2 of the stickies. The neuropathy must be affecting what remains of my brain.
Thanks for the vast amount of helpful information and comment that you've Posted...much appreciated.....

Did the "Supplements" you were taking, Remove or Reduce any "Numbness" in your Limbs that you had acquired because of PN?....I'm interested in trying the Supplement route to try to reduce/remove mine, which is excessive but don't know if my Specific PN type with the balance loss, heavy-fatigue inducing numbness, my Major symptom, will respond....as yours and Liza Jane's seem to have done...which sounds such a remarkable advance for you both and so encouraging to those of us who have been pretty much let down by their Doctors...

I apologise to yourself or anyone going through Posts, if reading the following info, yet again, but I don't know any other way, yet.. I feel that I have to keep Posting, with basic info, in order to explain and learn.....

My PN is: Idiopathic... Non-Diabetic, Non-Disease-Treatment Meds caused and non-Chemo caused....Triggered by repetitive left side physical repeated Tugging 30-40 mins....No Pain anywhere now, formerly in Neck for a few months!!? yes I'm fortunate in that respect...I know...just need a handle on an approach to reducing/removing this numbness and its effects....
thanks....

Ray
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Old 01-24-2009, 04:58 AM #47
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Angry Atypical face pain

Hi I have dull face pain on the left side. The pain started in my left ear, when I was a smoker. The smoking made the pain gradually get worse, and the pain eventually spread to my face. I was able to still drink alcohol for a couple years, but now I can only tolerate one beer a day. If I have two drinks or more I will suffer terribly. I quit smoking three years ago for the same reason. If I even inhale one puff of smoke my face will get considerably worse within minutes. My symptoms are dull aching and or pins needles along with some itching. I have tried a few meds, but I would rather not deal with the side effects. I treat with supplements and herbs, with limited results. Anyone out there that has their symptoms made worse from smoking or drinking ?
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Old 02-11-2009, 10:06 AM #48
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Quote:
Originally Posted by Wing42 View Post
in spite of a negative prognosis from three neurologists. I was in severe pain and burning for years, with loss of balance, foot drop causing frequent stumbles, no ankle reflex in left and 50% in right, and hardly able to walk. The pain ranged from 6-8 on the 0-10 scale with breakthrough pain at 9 or 10 experienced as either electric zaps, or feeling like a carnivorous worm was eating at my toe and metatarsal joints. I also had extremely hypersensitive skin, and other areas where the skin was numb enough to stick a pin in.

Now, I walk or hike an average of 12,000 steps a day on my pedometer, have wonderful balance (not as good as in 1992, but I'm 65 yrs old now). My pain ranges from 0 to 4 with very occasional breakthrough pain in the 6 or 7 range, about 2 now as I type this. Both ankle reflexes were measured at 100%. There are still some mildly numb skin areas, but almost no hypersensitivity. I still show some neuropathy when tested with two points, tickle, and vibration. EMGs and nerve conduction tests have always been normal since my PN was small fiber sensory.

OK, it's not healed, but I can happily go through the rest of my life like this. No longer does the pain wakes me up, stop me from walking or driving, and is never so bad that it's hard to concentrate.

The program I've followed all these years is on page 3 of the stickies. There have been changes to it the past couple of years, but the the essential program hasn't changed. It's a hassle to edit old postings on this forum, but I'll work with a moderator to do so one of these months.

A CHANGE: I meant page 2 of the stickies. The neuropathy must be affecting what remains of my brain.

Thanks so much for positing this. I've only just read it.

I've been feeling like I'm going mad... the burning sensation in my legs gets so intense and did vary from 7 to 10, now is much better varying between 2 to 8 depending on cold, draughts, etc. It affects my walking too.

But all my results came back negative too... and so I've been told that it will either go or not, and don't know exactly what it is. It sounds so similar... there are areas of my feet you can stick pins into with no feeling too.

I will check the stickies for a healing plan.

Thanks again
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Old 02-13-2009, 03:57 PM #49
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LizaJane Hi. I did not entirely understant your problem, but I am in bed all day because walking on my feet is so painful because S1 was damaged during a back surgery and hard telling what else. Sensory nerves are damaged to the point I have strange symptoms of cold feeling/hot burning/electrical impulse gone wild and large seeping sores oozing on the bottom of my feet. These are not real only it is how it feels. SO I get from your message that maybe I should walk anyway to keep my muscles strong in spite of the sensory insanity?





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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Old 02-16-2009, 09:36 AM #50
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Default What is a sticky?

What is a sticky and how do I access it?
===================================
Quote:
Originally Posted by Wing42 View Post
in spite of a negative prognosis from three neurologists. I was in severe pain and burning for years, with loss of balance, foot drop causing frequent stumbles, no ankle reflex in left and 50% in right, and hardly able to walk. The pain ranged from 6-8 on the 0-10 scale with breakthrough pain at 9 or 10 experienced as either electric zaps, or feeling like a carnivorous worm was eating at my toe and metatarsal joints. I also had extremely hypersensitive skin, and other areas where the skin was numb enough to stick a pin in.

Now, I walk or hike an average of 12,000 steps a day on my pedometer, have wonderful balance (not as good as in 1992, but I'm 65 yrs old now). My pain ranges from 0 to 4 with very occasional breakthrough pain in the 6 or 7 range, about 2 now as I type this. Both ankle reflexes were measured at 100%. There are still some mildly numb skin areas, but almost no hypersensitivity. I still show some neuropathy when tested with two points, tickle, and vibration. EMGs and nerve conduction tests have always been normal since my PN was small fiber sensory.

OK, it's not healed, but I can happily go through the rest of my life like this. No longer does the pain wakes me up, stop me from walking or driving, and is never so bad that it's hard to concentrate.

The program I've followed all these years is on page 3 of the stickies. There have been changes to it the past couple of years, but the the essential program hasn't changed. It's a hassle to edit old postings on this forum, but I'll work with a moderator to do so one of these months.

A CHANGE: I meant page 2 of the stickies. The neuropathy must be affecting what remains of my brain.
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