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Old 02-11-2009, 10:06 AM #1
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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 02-16-2009, 09:36 AM #2
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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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Old 02-16-2009, 10:39 AM #3
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Default this thread

this thread is one of 3 stickies. A sticky/stickie is a thread that does not move with time. It is always at the top of the first page of the forum.

The word "sticky" appears before the title of each thread.
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Old 11-13-2009, 12:40 AM #4
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Quote:
Originally Posted by texasgeek View Post
Thanks, Liza for posting. It is good to post positive stuff too. You've probably spread a bit hope around, not a bad thing.

Yes, I agree. My neuropathy has definitely healed too somewhat but it has been a slow process and at first I didn't even recognize that it was actually getting better. But when I stop and remember how much pain I used to feel walking the dogs for a couple of blocks. I would limp and have sharp shooting pains along with other kinds of pains and have to go very slow and be in a fair amount of pain overall.

It has been quite a while since walking the dogs has caused me very much discomfort. There is definitely still numbness but I don't get totally wiped out after going grocery shopping or shopping of any kind like I used to.

I have struggled to stay off the pain meds and it looks like I may succeed. I take aspirin now and then when I may have one of my bad days but mostly I do the B12, Bcomplex, benfotiamine (which may be the real reason for the healing IMO, don't know for sure) and ALC, ALA, MSM, Glucosamine, NAC, and lots and lots of other vitamins and supplements.

I have stayed away from doctors for a couple of years now, so I have no recent nerve velocity test to compare. Will probably try that again just for a checkup but I HATE doctors so much, they might cause me to have a relapse.
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.
Hi Lisa,

Thanks for the encouragement. I am new to this website and wondered how I access the stickies to see what your treatment plan is.

Thanks, Cecelia
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Old 04-25-2010, 10:47 AM #5
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Default stickies

what are the stickies
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Old 04-25-2010, 11:57 AM #6
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what are the stickies
Welcome to Neurotalk JoJo....

Two posts above yours explain the stickies. You posted in one of them, right here.

Stickies remain at the top of the page, and do not move. So you know where to find them each time.

This forum has been here since Sept 06. So there are many many posts to read and learn from. It takes time but it is well worth it. At the top of the index of each page, is a "search" function. Type in your keyword.... like "chemo" and search for posts that show up in answer. You can search many terms this way. Shoes, drug names, etc. Searching can save you time and also the time of other members who have answered many questions over and over. So do practice using "search".
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Old 07-29-2010, 09:31 PM #7
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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.
How do I get to page 2 of the stickies? I'm new to this site and am interested. Matt
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Old 07-29-2010, 10:10 PM #8
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Quote:
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How do I get to page 2 of the stickies? I'm new to this site and am interested. Matt
Matt.... you are in the stickies!!

But..... if you're trying to find them from scratch, here are some directions.


On the home page of the PN forum (as with other forums) the stickies are the first threads in the forum, so go back to the front page, and look up above.

The first things you see top left are green arrows. These are the sticky threads.

So far we have =

Sticky thread -Neuropathy does improve (Multi-page thread 1 2 3 4) started by LizaJane

Sticky Thread: - The Vitamin B12 Thread: (Multi-page thread 1 2) started by mrsD

Sticky Thread : - Help with applying for SS Disability. Started by DanP

Sticky Thread : - Important Links to Useful websites (Multi-page thread 1 2)

To find page 2 on any of these, simply click the 2, but you might like to read them from the beginning anyway, as there's lots of good information up there.

Other than that, go to the bottom right of any thread and you will see the page count. Simply press the page number that you seek.
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Old 10-30-2010, 04:34 PM #9
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Wing42 ~ Your first paragraph describes my pain to a T. Thank you so much...I thought I was crazy trying to describe the pain to my doctor. Electrical jolt is what I feel and my foot jerks and trembles at time.
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Old 02-23-2011, 08:15 AM #10
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Back in July of 2010 when still dealing with pretty much constant overall burning non-length dependent small fiber neuropathy that began in January 2010, I saw the title of this thread and said, "Yeah, right."

Now it's February of 2011. And there's been no more burning since sometime in the fall, just some residual skin sensitivity which means still not being able to wear certain clothing (fabrics).

The neuropathy is still there but to a much lesser degree. I've been told the cause of mine is Sjogren's Syndrome.

So glad I found this forum and decided to go for the recommended supplements (thanks to MrsD's posts) for these reasons:

1. Bad reactions to neurontin and Lyrica; and

2. MrsD knows what she's talking about.

As Sjogren's is incurable, the neuropathy will probably always be there to some extent. There's dizziness, a little loss of balance, etc. and a lot of photosensitivity (from Sjogren's), but overall doing so very much better. Just keeping my fingers crossed and continuing the supplements.

Sheltiemom18
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