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.

This is the most encouraging news I've heard today! My nerves can heal, and I don't have to believe these doctors who tell me otherwise. For all of us with idiopathic small fiber neuropathy, I rejoice!

ML

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.

From mrsD:
Edit to direct new members: These three links are to the 3 part posts of Wing42's suggestions:
http://neurotalk.psychcentral.com/post9580-18.html
http://neurotalk.psychcentral.com/post9583-19.html
http://neurotalk.psychcentral.com/post9586-20.html
Keep in mind that this is what HE found helpful for himself.
There is NO ONE protocol that will work for each individual with
PN... people vary, and have different genetics and chemistries.

Oh the tickle the tickle!!! You're the first person I've heard describe what I feel in the midst of an attack....my feet become hypersentive to touch and it feels like I'm being tickled. Which I hate and always have hated. To me, being tickled has always been painful. Never fun.

I'm glad to hear of your improvement. It's incredible. Congrats!

ETA: Page 3 of *which* stickies? There are 3 different topic headers. LOL!

That is wonderful news! It gives me much hope and I've wondered lately what a repeat nerve conduction study would show for my condition.

If you have the time, I'd like to hear more about the CoQ10 and acetyl L carnitine as well as the antioxidents you've been taking. I trust your knowledge as you're the one that pointed me to the B-12 therapy. Which has brought such relief to my symptoms.

What did the Docs say after you told them how you were treating your condition? I'd have loved to have been a fly on *that* wall.

I agree with you, doctors can do more damage than good sometimes. Especially when the patient knows more about their condition than their doctor does. My experience with doctors the past few years has been anything but reassuring. However, it seems I've now been blessed with a new NP that actually seems to know about PN and the issues I've had to focus on. So in that dept I have much hope.

Which form of Coq-10 are you taking there are 2 forms.

I meant page 2 of the stickies, near the bottom. Oh the embarassment!

The tickle test is to see if you feel the tip of a short length of nylon monofilament line of various stiffnesses stroking the area, i.e. how sensitive that area is to a very light touch. There are areas of my upper feet that are still numb to that.

Healing from peripheral neuropathic damage and how that damage trains your brain to inappropriately feel intense pain with every little stimulus is a very slow process. Progress is measured in six month or yearly intervals, so if you start a program that you think has a good chance of working with you, stick with it for at least two years.

As a general principle, if something is good for your cardiovascular health, good for your immune system, good for your general health, it is good for your nerves and brain and will allow healing. The supplements we need aren't obvious, but good diet, avoiding high glycemic index foods, daily exercise, weight control, not smoking, not drinking to excess, clean living (by that I mean avoiding drugs and other toxins as much as possible), stress reduction, enough rest, etc. are obviously good for you, and can only help your PN.

It is very important for the newer members here to realize that THEY
THEMSELVES have to become an active part in their handling of PN. One cannot expect a doctor to do the same type of intervention for PN that they do for say, pneumonia. So people do expect something and when they get NOTHING, it seems very unfair and frightening.

Because there are so many types of PN...it is best to know what you are
dealing with. So diagnosis is important up to a point.

But for day to day management of pain/discomfort, and for suggestions to
assist and speed healing if possible, the medical community is very ineffective.

Rose (B12) and I have been here over 10 yrs now (on this and the other forum).
I brought P5P and magnets to the boards long long ago. I also brought essential fatty acids (omega-3) research and in some cases was even attacked for that! Now we see transfats removed from our food and omega-3s now added to eggs/mayo and peanutbutter! And I search constantly for more ideas and offer my experience with my own searching for relief.
Now I see P5P in an RX designed for neuropathy! How cool is that? (Metanx).
And the reverse, the methyfolate I recommended for years has been sequestered by Merck to on RX use (not an FDA move), just because they want to sell more and make more $$ on RX products! Metafolin was SO INEXPENSIVE OTC...it is a crime that this happened!

So over the past 10 yrs, alot has happened to PN patients. I only hope that the new members read our board and the stickies to learn what their options really are!

Edit to add in 2012... since this post was written, Merck has released methylfolate BACK to OTC status on a limited basis. Solgar offers it OTC in 800mcg tablets. I guess they didn't make as much $$ as they thought by sequestering it to RX

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Important Links/stickies