Can you help me - I am computer illiterate mostly. How do I find the page 2 stickies????
This sounds so important & encouraging!!!
Thanks!!!!!!!!!!

you found this post?
 

You were able to post on this thread?
This is a sticky.

When you clicked on it, you had the option of scrolling down
and READING what was posted here.
If you click the page numbers, that show in the lower right and upper right, you can move along.
You clicked Reply--- it is in the upper left.

I think you should READ here more.
And remember-- all people differ. It depends on what is causing your PN in making a choice as
to what supplements you may need.
Basically there are:
vitamin interventions -- like B12 and Thiamine, B6 and folate
mineral interventions-- magnesium (sometimes zinc), chromium
mitochondrial aids -- like acetyl carnitine, CoQ-10 and r-lipoic acid
anti-inflammatory--- curcumin, fish oil, vit C, other antioxidants
healing oils-- fish oil, flax oil, evening primrose

Drug induced PNs typically need the mitochondrial types
Diabetes induced PN typically needs vitamin and mineral interventions
any nerve damage especially axonal needs healing oils
autoimmune needs the anti-inflammatory agents

Some people need supplements from more than one group for relief.

This is a hint for people who are not confident on computers:
just click on things and see what happens.
To go back you hit the back icon at the top left of your screen.
Do not hit "home" if you don't want to leave here.
Once you do things you will learn faster. Doing is faster and longer
lasting learning than memorizing keystrokes.
This style board is pretty easy to navigate compared to others on the net.
You just have to practice! ;)

ARMAC I was uplifted by your "healing" message...physically (heavy root pulling) caused my Neuropathy since August 2007.....no pain after 4/5months...both feet,both legs,left arm,hand/fingers all very numb but no pain or any other symptoms left face some numbness, right hand gradually numbing, no pain.....Planning to try CoQ10 (ubiquinol) and Acetyl L-Carnitine....wondering if there's been any success-feedback on removing Peripheral Numbness as the only Symptom (no Pain)

Supplements and reduction of Idiopathic PN Numbness?
 

New to Neuro Talk (Dec 2008)..Inspiring to read Your "PN improvement description and your own success with it.

I'm wondering if the Supplements approach would reduce my Major Symptom..Numbness..NO Pain involved now,formerly Cervical (neck)Pain for first 5months..heavy numbness in Feet,Legs,Left Arm,Hands,Left Face, progressing...

Puts my PN in perspective when I read and consider what people are having to deal with...including Pain.

PN Physically Caused 1.5yrs ago by repetitive,Tugging Work..ie Non-diabetic,Non-disease non-Meds.,Diagnosed as Idiopathic PN..and left to get on with it (National Health Service UK)..oh,nearly forgot..was prescribed Anti-depressants....now stopped (because of side effects)

now..left with all this numbness, really bad Balance (and Fatigue from ME/CFS since childhood)...particularly exhausted at the moment......

but it is Numbness that is the real problem..unable to function normally..or work (Musician).

Can't find any info on this "Physically caused" PN..hoping the Supplements might be the way to go, first..

thanks for your Post....hope all is going well for you and that the Symptoms are still on the run......!!

Ray

what program?
 

i'm dealing with alot of stuff, apparently PN and AN or the biggest problems. i'm 28 feel physically out of wack and not getting anywhere. what program did you follow? i don't know where or what are stickies. i'm new to this.
-thanks

Supplements and reduction of Idiopathic PN Numbness?
 

Thanks for the vast amount of helpful information and comment that you've Posted...much appreciated.....

Did the "Supplements" you were taking, Remove or Reduce any "Numbness" in your Limbs that you had acquired because of PN?....I'm interested in trying the Supplement route to try to reduce/remove mine, which is excessive but don't know if my Specific PN type with the balance loss, heavy-fatigue inducing numbness, my Major symptom, will respond....as yours and Liza Jane's seem to have done...which sounds such a remarkable advance for you both and so encouraging to those of us who have been pretty much let down by their Doctors...

I apologise to yourself or anyone going through Posts, if reading the following info, yet again, but I don't know any other way, yet.. I feel that I have to keep Posting, with basic info, in order to explain and learn.....

My PN is: Idiopathic... Non-Diabetic, Non-Disease-Treatment Meds caused and non-Chemo caused....Triggered by repetitive left side physical repeated Tugging 30-40 mins....No Pain anywhere now, formerly in Neck for a few months!!? yes I'm fortunate in that respect...I know...just need a handle on an approach to reducing/removing this numbness and its effects....
thanks....

Ray

Atypical face pain
 

Hi I have dull face pain on the left side. The pain started in my left ear, when I was a smoker. The smoking made the pain gradually get worse, and the pain eventually spread to my face. I was able to still drink alcohol for a couple years, but now I can only tolerate one beer a day. If I have two drinks or more I will suffer terribly. I quit smoking three years ago for the same reason. If I even inhale one puff of smoke my face will get considerably worse within minutes. My symptoms are dull aching and or pins needles along with some itching. I have tried a few meds, but I would rather not deal with the side effects. I treat with supplements and herbs, with limited results. Anyone out there that has their symptoms made worse from smoking or drinking ?

Thanks so much for positing this. I've only just read it.

I've been feeling like I'm going mad... the burning sensation in my legs gets so intense and did vary from 7 to 10, now is much better varying between 2 to 8 depending on cold, draughts, etc. It affects my walking too.

But all my results came back negative too... and so I've been told that it will either go or not, and don't know exactly what it is. It sounds so similar... there are areas of my feet you can stick pins into with no feeling too.

I will check the stickies for a healing plan.

Thanks again

LizaJane Hi. I did not entirely understant your problem, but I am in bed all day because walking on my feet is so painful because S1 was damaged during a back surgery and hard telling what else. Sensory nerves are damaged to the point I have strange symptoms of cold feeling/hot burning/electrical impulse gone wild and large seeping sores oozing on the bottom of my feet. These are not real only it is how it feels. SO I get from your message that maybe I should walk anyway to keep my muscles strong in spite of the sensory insanity?

What is a sticky?
 

What is a sticky and how do I access it?
===================================

this thread
 

this thread is one of 3 stickies. A sticky/stickie is a thread that does not move with time. It is always at the top of the first page of the forum.

The word "sticky" appears before the title of each thread.

Neuronton
 

The docs wanted to put my husband on Neuronton when PN pains made it almost impossible for him to walk. He has problems with almost all meds and when he learned the side effects, we did not even get the RX filled! He had already been taking the supplements mentioned here, but the therapeutic block which was supposed to help had made the PN worse. I found out about Neprinol from the QXCI forum. An MD recommended it. He did not sell it, but found it more effective than other forms of Nattokinase. It has other enzymes in it, too. It took several months, maybe because he had to take a reduced amount, but it got rid of all the PN pain.

how????? i am being prepared for a lifetime of pain

I am half way there!!!!
 

:grouphug: I've been a part of this group for the last four years. I came here unable to walk. Now I'm walking, back to work, even taking a Yoga class three times a week! I've lost 40 pounds and plan to lose 60 more.

I have my days, and my weeks. I know that if I don't keep stress in check, it will check me and put me in pain for a week or so. I've figured out I have about a 3 day delay in my cycles. If I "splurge", and push myself, it will hit me within 3 days.

My doctors did pretty much "nothing" for me except tell me I have Small Fiber Idiopathic Peripheral Neuropathy. Ran lots of tests on me and sent me home with lots of medications that made me unable to function at work. I lost my job and was even more depressed! This group taught me what I needed to get back on my feet. (Even after I fell a few times and tore my rotator cuff and couldn't use my right arm for 3 months!)

I followed Bob's diet advice.. (Wings 42) and I take Vitamin B supplements. I eat Spinach and Salmon three times a week. I hardly ever eat red meat... I put Flax seeds into my morning smoothies and have learned to say no to a lot of things I used to love. By taking control of my own life.... I've taken control of my disease! (I'm still sad that I can't wear a pair of red high heels!) At least I can walk now... and I couldn't say that 3 years ago!

The people on this board have not only helped me pull myself up with my Neuropathy, but also from the Depression that comes with being diagnosed with a disease!

Thank you all! And for you Newbies... there is hope.. don't give up! YOU have to be your own advocate!

Steve, sent you a PM. What is the TOS Forum?

Jay

I was reading this and I am a first time user on this site, and reading what you wrote really gives me hope, I have suffered several years, and no one could find anything to help me. and I have heard of coq10. I was curious about trying it and if it would really work. Now I will see about trying it since it has worked for you. Thanks

We should always be careful not to expect miracle cures for anything. Unless we are doctors (with paid up malpractice premiums! lol) we should also be careful of what we are telling folks. Lizajane, as I assume you are not a professional doctor, could it be that the doctor was right after all? It seems to me that there always is that possiblity, as well as the possiblity that he was wrong. If something seems like a particular Dx, doesn't always mean it is.

Hope is a good thing, unreasonable hope is a dangerous thing.

Jay

Neuropathy replies
 

Thanks so much! I went to the Neurosurgeon God today and left with my usual disgust and order for a new MRI.

Once again, God Bless You all for sharing. At least I know I am not completely crazy yet.

Page 2 of
Important Links/stickies :winky:

jsrail: I've just read your note suggesting that maybe the doctor who said I never had neuropathy was correct. I understand the fear that hope can become a belief in miracles, but really, I'm not a miracle.

I have a real sensorimotor neuropathy, with autonomic involvement. Over the past 10 years or so there were periods of great sickness and symptoms, and periods that were better. But the trajectory, putting it all together, was slow and steady improvement.

I always felt best when I was on antibiotics for my chronic sinus infections, and many of us here noted some sort of correlation between infections and neuropathy. When my sinuses were infected, my neuropathy was worse; when I was on antibiotics, I felt more well on all parameters, including neuro.

My EMG/NCS are not as good as the test results I described in the post you responded to, but still, I am much much better.

In the end, my diagnosis is still confusing, but now there is even more hope.
I have tested positive for lyme, and markers of chronic lyme are all positive.
I have been on antibiotics since February, and I can now count 3 full weeks of wellness, including improved neuro function. I have signs of autoimmune illness, but the general thinking is that there was a trigger for the autoimmunity, and it was probably the lyme bacteria.

I can expect at least 12 months of treatment, and I'm finding it easy to tolerate while seeing a doctor who is very experienced in caring for complicated patients as well as chronic lyme.

I have no idea how many of us with "idiopathic" neuropathy have lyme, but anyone who has neuropathy should be tested for it.

I did improve, and hope it continues.

Best to all..

LizaJane, it is wonderful to hear of your improvement, and any improvement here on the forum. Neuropathy sufferers really need to hear it for that mental boost. I was tested for Lyme which proved negative, so I am still ideopathic, but I pray that what is ever wrong with me, will eventually try and straighten itself out. We all continue to look forward to more success and improvement stories here. God bless....:)

meds
 

first time on this site i am on my 2ND day with no methadone i take only 5 mg a day that seemed to work for years only slightly but every bit helps also 2400 mg neuron tin and wellbutrin. As a member of the NA years ago i was told that people got big relief from it. i can not open lizs link does she give a list of what she takes .............thanks bill

My neurologist laughed at me when I told her that a doctor suggested my nerves may heal. (a doctor had)

She said no, if I am lucky I will not get worse. Oh what a glass 1/2 empty person she is. :rolleyes:

New Kid & questions
 

As brand new to this forum I am really pleased to find this resource. My general question to all is :Has anyone had success with the ReBuilder medical device? Been looking everwhere for up to date clinical results or anything not posted by manufacturer or affiliate sellers!

This search result gives 3 pages where Rebuilder was mentioned:
http://neurotalk.psychcentral.com/se...uery=Rebuilder

You'll have to click on each one, I'm afraid. There are many.
In essence some like it and for some it didn't work.
In my own opinion, I think the magnesium they put in the water bath is responsible for most of the effect.
You can do this yourself with epsom salt foot soaks. Use tepid water in a pan or tub and add 2oz to a small container, or 4 ounces in a bath tub and soak at least 1/2 hr. The bathtub will get slippery so be careful there. (without the electricity part)

I am new...and in total misery !
 

I am new to this site, DESPERATE for HELP !

About two yrs ago, I had a epidural nerve block near my thoracic spine for post-surgical cardiac pain. The Rx that was used was a very stong steroid called DEPO-MEDROL.

The pain MD who administered it (an anthesiologist) did not use flourscopy as I later found out he should have used...and I learned that DEPO MEDROL is by its own maker, Pharmacia, NOT to be used anywhere near the spine...without possible serious neurological complications, including ARACHNOIDITIS and extreme sensory nerve disturbance.

Over the past two yrs I have had five MRI's, none show ARACHNOIDITIS. BUT ever since this TOXIC steriod was injected near my spine, my feet first began to BURN, then my legs...now my lips, my face....the MDs and neurologists cannot find a cause other than some slowing on NCS.

The neurologists are saying I have "small sensory nerve fiber neuropathy" to "idiopathic neuropathy" to asymetical dymyleinating axonal polyneuropathy."

The BURNING in my FEET and legs has become some unbearable, I have LOST my job because I cannot keep up with the work due to this extreme pain, barely able to walk.

The MDs have thrown EVERY Rx at me...Neurontin, Lyrica, Cymbalta, Effexor ER, Keppra, Lacmital, Topamax, NORCO, fenatyl patches, Tramadol, Ultram...all have either given me a bad rash or made me so dizzy and short of breath that I have had to stop.

SO then I found this vitamin supplement on the web called NERVE SUPPORT FORMULA, with HUGE amounts of Vitamin B1 in the form of Benfotiamine, 103 mg which is 6,875% OVER the RDA and Vitamin B12 in the form of Methylcobalamin 1000 mcg which is 16, 6666% over the RDA in ONE CAPSULE ALONE. And the manufacturer recommends FOUR a day of these capsules to "heal neuropathy."

Well, I started taking four at first, and they seemed to help for about six months, but then made the BURNING PAIN WORSE !!

So I finally begged my neuro for SOMETHING, and she now has me on 3 mgs of KLONOPIN a day, which somewhat helps but not a whole lot.

I have been reading this blog, and began using about a month ago the recommendations many say here to use:

1) CoQ-10 200 mgs a day
2) Acetyl L-Carnitine, 1000 mgs a day
3) Vitamin E, 800 I U a day
4) Magnesium, 250 mgs a day
5) Purified fish oil, 4000 mgs 3 x a day
6) One of the NERVE SUPPORT FORMULA (the high Vitamin B1 and B12 dosages) every other day.
7) Zinc, 30 mgs a day
8) Two multiple vitamins a day

WELL, I AM BURNING WORSE THAN EVER !!!! My legs and feet are on fire so bad right now that I don't know what to DO !

I have TRIED EVERYTHIING, and nothing helps !!!

What do you all recommend, please, I BEG YOU FOR YOUR HELP !!!

I have seen FOUR neurologists, TWO Pain Management experts, orthopaedic surgeons, neurosurgeons, endocrinologists....NO ONE IS HELPING ME !

And the natural supplements are not either, I continue to grow worse !

Someone told me that sometimes with natural remedies like these supplements, the pain becomes worse at first but then becomes slowly better.

My feet are not as NUMB as they were, not as much pain...but so BURN !!
And my legs, too...and my feet are STONE COLD, especially my toes !

I am in such pain with this burning pain that the only remedy is to KNOCK myself out with the KLONOPIN for a while.

Am I taking too much of the vitamin supplements? I have a friend who says to STOP it all, even the vitamin supplements, as I have "toxified" my nervous system worse than the DEPO-MEDROL strong STEROID SHOT DID...and may have permanently damaged my nervous system !

I DO NOT KNOW WHERE TO GO FOR HELP...I have spent TENS OF THOUSANDS of $$$$ on medical tests, MDs, Rx and now vitamings....am losing my job,may have to apply for Social Security Disability because the burning pain in my feet and legs and even in my face around my lips is so bad I can no longer bare it .... other than "CHECK OUT"...I do not know what else to do for relief !

PLEASE, PLEASE, I beg you good people...any advice, please !!! PLEASE !!!

Thank you !!

Hurtin' Nerves
Chicago northern burbs
USA

I think you may have developed RSD... this is a nerve condition that results from trauma. There is a board here for it:

http://neurotalk.psychcentral.com/forum21.html

It is a condition where the sympathetic nerves get stimulated and don't shut off. It is not responsive to supplements the way PN is.

Certainly by now, you should see some positive results with your supplement list. If you are not, then I'd stop taking them.

I would get tested however to see if you are B12 deficient, have a reading below 500. Also people with chronic pain can have very low levels of Vit D. When this is fixed some pain may resolve. So get tested for both of these.

RSD may spread and become full body symptom-wise.

You may also have an autoimmune problem, and this can be tested for with blood tests.

The posters on this board are not really experienced with spinal injections and damage as a result. You might ask these questions on the Spinal forum here:
http://neurotalk.psychcentral.com/fo...sprune=-1&f=22

Thanks for the hope, I need it.
 

Thanks for your contribution. Could you be a little more specific about the supplements you are or were taking and the dosages. My Dr.'s just want to give me heavy drugs to deal with my neuropathy. Any suggestions would be so helpful. I sure hope you still check your messages here once in a while.Thanks,
Faithful

Several people here have found that as their nerves were healing the pain actually became worse for a while. The pain also may feel the same as when the pain when the nerves were first being damaged...in your case burning. The fact that your feet are less numb and the other pain has diminshed the burning may actually be a good sign. Only time will tell if you continue to take the supplements.

Any improvement would be WONDERFUL !
 

I have been suffering with this dam neuropathy for 5 years now , and it is getting worse. Nice to read some stories of hope. The pain and burning has now moved into my hands and scrotum as well even with tight glucose control. It is becoming all consuming. My Dr's say this is nothing left to try, and that basically there is no hope. This is my first attempt to reach out and talk with others who suffer as I do. Not sure what else to say. Hope this post finds you all well and maybe haveing a tolerable day.

Dont give up
 

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?
 

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
 

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

Lephratax?
 

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.

Thank you.
 

: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

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.