Neuropathy does improve
 

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.

thank you!
 

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:hug:

Mine improved too
 

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 :confused: 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. :o

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.

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.

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! :hug:

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

LizaJane
 

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. :D

TexasGeek
 

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. :D

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. :rolleyes: Lord, spare me from arrogant, know-it-all doctors who in reality don't know diddly.

Back to the stickies! :)

Insidious....
 

...relentlessly progressive , irreversable once established ,thats just a sampling of the prognosis of neuropathy found on most sites and unfortunantly in the mind of much of the medical profession. Little wonder that most newcomers to this forum are so traumatized by their symptoms and diagnosis. Thank goodness for the positive reporting from others on this site such as Wings and Liza. Yesterday marked my one year anniversary of this wretched disorder and I am much better. My pain has all but disappeared and my balance improved, for this I am delighted. I follow Mrs Ds regimen suggestion in the stickies faithfully. Does it help? I can only assume so , but I sure didnt get any suggestions from the Docs. And for the sake of any newcomers to this site looking for a glimmer of hope or a bit of advice concerning strange symptoms ,I shall list the following..piercing, crushing, unseen insects crawling, searing burning ,electrical shocks ,invisible rain drops , pins and needles and all around feeling lousy! So no ,you are not crazy ,and you can get better! Thanks to all....Tom