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)

Hi I suffer from this terrible condition too. Mine is on the left side of my face , but also affects my left temple. I take no drugs for it, only supplements and physical activity. I have had this 5 years now with no end in sight. I cant drink or smoke anymore because my pain gets incredibly worse if I do. I am getting some relief this week though. I dont know why, but I have had short periods of relief. My pain is usually constant, so I know when it feels better. You need to keep researching the internet and sites like this. There is a product called NEUROPATHY SOLUTIONS. that may help you. I will try and get the number for you or just type those two words on google and that should pull up their website. Best wishes JEFF

Where do i find these stickies?

WHERE DO I FIND THESE STICKIES?

It has been said that at the beginning of this thread, there are THREE stickies posted at the top of the page, containing supplementation advise for PN.

I go to the beginning of this thread and see NO such stickies, just postings. On page two of this thread there is a supplementation list given but not by WINGS ... by Liza Jane. Yet I hear references to a "sticky" by WINGS and yet cannot find it ... or by Ms. D...where is that one?

A link to these stickies, please? EXACT LOCATION ... are they on this thread or a different thread ? IF on this thread, what page number, how many posts down, by who??? I just do not find these "stickies" and they sound very important to help me and many...but what good are they SINCE I and many others do not seem able to find them?? :confused::confused::confused::confused::confused:

--Hurtin' Nerves

Hi and welcome

"sticky" threads are ones that are pinned to the top of the forum

so if you are looking at the forum main page, you will see the "sticky" threads at the top
http://neurotalk.psychcentral.com/forum20.html

you have posted this on one of them...LizaJane's "sticky" thread

A thread is an series of posts on a specific topic while the forum is comprised of many threads and pages

hope that helps

For Hurtin' Nerves

Click here: http://neurotalk.psychcentral.com/thread177.html ... (it's the fourth thread down from the top titled: Important Links/stickies ) and you will see several posts that contain lots of PN info and reference materiel by Bobbi, Glennta, MrsD, and Wing42. These 4 folks have listed lots of sites that will give you plenty of informtion. Check it out.

DanP

On my way to healing

I am 67 - active - horse carriager, gardening etc. I was diagnosed with Idiopathic peripherl Neuropathy 5 years ago. Numb feet and hands and odd pains. The Neurologist put me on Gabapentin - and suggested I take B12. Not only did this not help, but I got worse. Threats of paralysis, on one time after a quiet lunch, my right leg felt as though it was being wrenched from my body. THATS IT! I thought... I went to a health shop, and got everything that would lift my health, including Lipoic Acid (by Metagenics) each tablet is 300mg - I take 2 per day - also I take Olive Leaf Extract. My GP, an honest women, said "You don't want to visit the Neurologist because he has nothing to offer you."My Dr. suggested I went to an acupuncturist. He was also a GP too. He works on me once a fortnight. I then went to a Naturopath who prescribed ACTIVE ELEMENTS 4.1 and 4.2 and 4.3. They are minerals. Finally I discovered LEPHRATAX. I have been taking this for 4 months now. GUESS WHAT? I have no pain - the numbness is receeding, I sleep well - I am gertting back to higher energy activities - I am no longer a pending cripple. Good luck to all who read this

I assume that this posting from the one-time-poster 67 year old about LEPHRATAX is just an advertisement.

Has anyone else heard about this? And does it work at all?

I looked that supplement up.

It is a long list of tiny amounts of many herbs. I don't have much faith in it. Since active principles in herbal products are very dilute using these tiny doses of whole herb seem strange to me.
3.11mg of egg shell calcium? :rolleyes:

Here is the list:
http://lephratax.com/ingredients.html

This site says the supplier is a "problem"... first comment below the article:
http://www.complaintsboard.com/compl...04/page/1.html

If you Google Lephratax reviews you will find more (one very long disturbing blog) and only advertising.

The price for this product is a joke IMO.

:DJust passing by for an update and to offer hope and to say a big thank you to this forum. Now my pain and numbness have gone and energy levels are greatly increased although I have to still rest and its fab to sleep through the night again. Thermal threshold tests also confirmed an improvement. I get the occasional pins and needles in my feet if I am run down and move off my diet. I take alpha lipoic acid, Q10 and acetyl l carnetine daily, no caffeine, no alcohol, no sugar, regular protein in my diet and lots of water and I did a course of acupuncture. In retrospect I wish I hadn't wasted my time with the traditional medical model although I had to but it only told me what I didn't have and did not deal with whatever was going on for me.

My history was

My history is that I had tiredness, pains in my wrist and numbness in feet from summer 07 and my GP said its having 2 young kids (2 and 4) and wear and tear (am 45). June 08 I was in the park and had numbness from knees down both legs to my feet and in my hands, it happened just like that. I could feel but like wearing socks and burning feelings. I was exhausted for a few months and just got thru the day but wanted to sleep the whole time. I can't let the boys sit on my lap anymore as my feet get even number and more painful or if they knock into me it sends jars of discomfort. The tiredness has got much better tho am aware of energy reserves that run out. My wrists 'go' if I pick up heavy bags, right was out for a month in january after lifting one of the boys where it was continually uncomfortable and burning. I had tests for diabetes, thyroid, mri, lyme, b12, kidney, liver, choloestrol, hep c, hiv, ssep nothing so the neuro explained the mind body link at my consultation over xmas(!) - he then did a thermal test and said I had small fibre neuropathy. 2 weeks ago he emailed to say I had anti GQ1B IGG gangliosides which are associated with a rare variant of guillan barre called miller fisher I am confused as I have none of the symptoms I have found on the net eg eye problems or ataxia or areflexia. Does anyone else have something similar please and could you recommend any treatment?
Thank you

Quote:

Originally Posted by texasgeek (Post 260166)

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 (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

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

Anti Mag Anti Body Neuropathy

I have recently been diagnosed with "Anti Mag Anti Body Neuropathy". I have tingling all over my body, feet pain and muscle spasms. My B12 was extremely low so I am taking injections now. Is there a diet/vegetable/vitamens I can get on to help me?

My neurologiest told me to watch vatiman b6 because it would make the neuropathy worse.

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.