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.

Jarrett--The doctors showed way too little interest in what I had to say, unfortunately. But the protocol I followed is the one posted in the stickies. There's a list of supplements, and the advice: use it or lose it. You have to keep trying to use muscles that you cannot feel, or which are weak, to keep stimulating the nerves leading to them.

I'm not a bit surprised by that attitude, LizaJane. They know everything there is to know, donchaknow. After all, they're the ones that have been to college and medical school. Lord, spare me from arrogant, know-it-all doctors who in reality don't know diddly.

Back to the stickies!

I do not see stickies.. Please help

What/where are the Stickies? I am trying to find the protocol LizaJane posted in the stickies.

thanks.

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