NeuroTalk Support Groups - Neuropathy does improve

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Peripheral Neuropathy (https://www.neurotalk.org/peripheral-neuropathy/)

- - Neuropathy does improve (https://www.neurotalk.org/peripheral-neuropathy/43699-neuropathy-improve.html)

btw how do you diagnostic neuropathy? I have often burning pains and even a bone pains sensation. Sometimens comes, sometimes goes. My EMGs are all negative; MRI all negative, QST one is positive and another negative. My GP wont run a nerve biopsy. Vitamin D is in deficiency.. Please if anybody read that i know you can have more experience than me. Its really a neuropathy? It could really be a psychogenic pain? I have it since long and i dont sure about the last thing:S And if was a neuropathy or a psychogenic how does improve that??

Quote:

Originally Posted by Marianolp (Post 1203868)

I have SFN diagnosed with a skin biopsy. Just having the diagnosis eased my mind. It helps to know that I'm not crazy. Especially since the first neuro I went to told me I was making up my symptoms. I honestly thought I was losing it.

had enough of so called doctors if you see 4 of them for the same problem you have 3 different answers!!

Quote:

Originally Posted by Marianolp (Post 1203863)

Steve, i read you on another site asking is this can be anxiety. So do you have a diagnostic of small fiber?? and how you cure that? thanks

It's everything really. Sleep, stress, blood sugar (around 80 is good), proper water intake, a lower carb diet with plenty of protein and saturated fats and cruciferous vegetables (if that is the right diet for you), walking in nature and walking barefoot in the morning sun (mitochondria as mentioned before by LizaJane) the right supplements, being happy, sometimes a lifestyle change.

A good deal of disease is probably generated by our habits and most "disease processes" can be affected by the change of habit and attitude and even if they cannot be "cured" they can be greatly improved or managed.

How can I heal and get off nucyntaHope

Quote:

Originally Posted by LizaJane (Post 260117)

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.

how can I heal and get off nucynta

Diagnosed with PN probably from alcohol or possibly Lyme

I have had a slow progression of numbness and then tingling in my feet for a few months. My general doc who I just saw for a checkup said it was PN with alcohol or idiosyncratic casuses. My B-12 was around 400. I haven't gotten into see a neurologist yet but have stopped drinking and started on the suggested B12 & other Bs program. I'm starting to already feel less numbness and the tingling has moved down my leg to mostly my feet. I spend a lot of time outdoors and have had many tick bites so I'll have my neurologist check for lymes too. I've had one or two glasses of wine in the last few weeks but not the usual 2 to 3 most days. I hope the improvement continues! Thanks to everyone who has contributed to this site!:)

A friend had decades of neuropathy and finally off gabapentin and finding good help with grape seed extract. She still have some issues but much improved. Her issues are from statins and too many abx class of Fluoroquinolones

I never had the dx but deal with some with OA in my feet and Vicks Vapor Rub helps and I add drops of Lemon Oil to the drops.

Many can be deficient in B12 and magnesium for just a couple.

I would like to bring up this thread as I think it can be extremely helpful for those searching for some hope like me. the last post is now more than two years ago and I would like to motivate people whose symptoms have improved over the course of time to post their "success story" here. I would love to hear from you and I am very interested all the details of your road to improvement.

On top of that, I have a general question regarding healing or improvement. I often read and hear that there is no such thing in neuropathy and that it cannot be reversed. Why is that? I have read somewhere that peripheral nerves can regrow so if the underlying cause of the nerve damage is eliminated why do some people think it its not possible to get better? I understand that this does not happen often and especially in idiopathic and diabetic neuropathy it is difficult/impossible to eliminate the cause, but is it generally impossible for the nerve to regrow? And even if the nerves do not fully regrow, symptoms might be lessen over time.

Can you say more - what do you take that is "feeding the mitochondria"? I don't usua

Quote:

Originally Posted by lizajane (Post 260117)

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.

can you say more - what do you take to feed the mitochondria?

new to the forum: where to find stickied programs?

Hello- I realize this post is more than 10 years old, but is nevertheless very encouraging :)

How do I access the program on page 2 of the 'stickies'? And where to I find the stickies in general- is a sticky for the overall website or for a particular subforum (e.g. peripheral neuropathy)?

Many thanks in advance!

Quote:

Originally Posted by Wing42 (Post 260144)

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: