I am new here & have read many helpful tips - I am so very thankful for this group already with only having been a part of it for a few days. But I am wondering if I am missing out on any success stories. Is there a section for them? I see loads & loads of 'I'm going to try this' or 'I just started doing this' but much less of 'It works!' As many people probably do, I have come here primarily for hope. I am terrified of this affliction that has suddenly taken over my life & I am desperate for some good news. My hope is that perhaps those that have found extreme relief or a cure have not taken the time to come back to post about it. Or perhaps I am just missing where these happy posts are hiding. I apologize if this sounds negative at all... I'm just so hoping for a light at the end of this tunnel & nothing is more promising than positive testimonials. Thanks!

With over 100 causes of PN, there are not going to be many
people who have improved, whose story is going to help everyone. Each person is unique.

Basically if you 1) get rid of triggers, and toxins,
2) fix any secondary cause like diabetes, or vitamin deficiencies,
thyroid problems, etc. -- you will at least arrest progression and/or improve. But 100% improvement is not likely for anyone.

If you have a hereditary PN, there is no known treatment at this time (besides symptom reduction). There are triggers and drugs to AVOID but little evidence of improvement once those triggers have done their dastardly work.

When I fixed my thyroid problem, I still had some residual PN. Nothing horrible, but still some numbness in 2 toes of each foot.
My recent bout with my blood pressure medications, set me back a bit, but now I am having less burning.

Basically PN is an environmental problem. (except for the hereditary folks, but still for them they have environmental and toxin triggers too). You will find if you search here, some people become more able to function daily once they fix their particular problem. But it takes motivation, and will, and energy to become your own advocate and some do not choose that path. Sadly many doctors don't offer much either.

There is no cure. But you can feel better, have less pain, and hopefully less progression if you work towards that goal.

Your most likely improvements will come from fixing nutrient deficiencies and adjusting diet to get rid of sugar and perhaps gluten if gluten is your trigger. If you continue with a drug, or toxin exposure, your chances of improvement are much less if that drug or toxin is your problem.

Thank you so much for your insight & quick response. I am absolutely geared up & prepared to be my own advocate at healing myself as I am convinced that traditional medicine got me into this mess to start with. But I'm not really sure where to start. I have quit drinking & cleaned up my diet (it was fairly clean to start) I'm continuing on with my daily exercise & supplement regime. My Neuro wants me to take meds... my chiropractor says 'sure, give it a shot' to most of what I suggest & my holistic MD wants me to meditate more?? Ugh.
So, basically I have been Googling my week away reading about various supplements, the Rebuilder, Anodyne therapy (have you heard of this?) and drugs that no one seems to say work.
I am trying so hard to remain positive as I'm a born cheerleader at heart but I must admit that I am crying an awful lot these days.
Other than my love for wine I'm a healthy 38 year old wife & mother. I have suffered with multiple hormone related ailments since going off of the Pill in October but this undiagnosed PN affliction began tentatively years ago so I'm guessing that my hormones are probably not be related to this sudden onset of full blown painful, tingly, sleepless symptoms.
Again, I appreciate you for listening. I'm a fairly private person & other than my immediate family I haven't been sharing this personal hell. I'm so grateful for your response & your kind, knowledgeable ear. I see MANY folks on here feel the same way. So thank you!!

There have been success stories here. Brian is one, Liza Jane another, glenntaj is doing much better, wings also, sally blooms is too. There have been others. Also many people may not be totally better that post here but learning about nutrition, exercize, medication to avoid, what works what doesnt, doctors, gluten, antibiotics, etc has helped them to prevent becoming much worse or has helped them to improve overall if not totally better. Very little with peripheral neuropathy is black and white, it is almost always shades of grey. No one knows and no one can predict if you will get better, stay the same or if PN will progress slowly or quickly. everyone is different. The best you can do is to provide your body with the environment , nutrients and supplements that will maximize your potential to have your nerves heal. We all have dark times, im having a dark period right now myself but dont ever give up hope.

Do you have an integrative MD? Is your holistic doctor an MD? I can't believe you were told to meditate. I hope you can find someone that really is good and can help you heal with supplements and diet. It can help a lot in many cases, not all of course. SO many causes and illnesses.

I am much better, I have Autonomic Neuropathy as the cause of my Dysautonomia/P.O.T.S. I take supplements and changed my diet since my doctor knows how to help the nerves improve/ heal.

I also have CFS, for 20 years so, I have been sick a long time. Another serious illness before that. My family and hubby are fantastic.


Do not lose hope. There is always more information to learn. Always new doctors to see that actually know about supplements and diet. I like the book "Minding my Mitochondria." VERY good. There are excellent books to get the diet right. Wheat Belly is another.

I'm sorry that you aren't feeling great Echos - it really makes me appreciate your taking the time to cheer me up even more. I've had a really bad weekend but I'm feeling more positive after reading some posts here & delving further into my history.
I'm thinking that this PN is not hereditary, nor alcoholic but stems from my 2 year on again/off again relationship with Spironolactone. I had all kinds of nasty side effects while on it but it helped so much with other symptoms that I tried to stay on it by flip-flopping my dosage for almost 24 months. I now realize that the tingling in my fingers back in January of 2011 was probably the beginning stages of NP & not repetitive stress syndrome as my chiro indicated. I'm KICKING myself for not listening to my body... getting off of that awful drug & getting tested for this months ago. I'm pretty sure that irreversible damage has been done especially since I haven't had a lick of Spiro in my system since early November but I'm a complete mess of nerves & pain. I'm planning on meeting with my MD (yes she is integrative Sally - albeit a bit moon & stars for me if you catch my drift) tomorrow to go over the supplement list that Wings has on the sticky & see what she thinks. She is very kind & I feel lucky to have her although I'll be forever bothered that meditation is a go to solution for her. I'm also going to meet with an acupuncturist (fingers really crossed there as I loathe needles!).
Thanks again to all of you who listen & reply. I have made a mental promise to myself to visit this forum often & help others if I ever can. Peace to you all :-)

Wine contains many congeners which are byproducts of fermentation. The congeners may cause as many or more problems as the alcohol it contains.

I'd cut out the wine for a while, and see what happens.

People who drink may do well on Thiamine or Benfotiamine (its improved cousin). Thiamine is the cofactor in alcohol metabolism and if your problems are aldehyde based...it may help. 300mg in divided doses of Thiamine or 300mg of benfotiamine daily (no need to divide doses), would be a first
thing to try.

Mitochondrial support comes from acetyl carnitine, R-lipoic acid, biotin, and CoQ-10. Some of these are expensive, so trying the Thiamine first will show you if this is "wine" based.

Thanks again Mrs.D. I gave up the wine last week but my symptoms have worsened. I wish it was the wine causing PN but my gut tells me that it was the statin drug I took for almost 2 years.
I plan to continue my very clean eating & not drink a lick of alcohol but I'm wondering what your advice would be as far as supplements go if the toxicity of the statin is the root of my PN issue. Do you think that a drug I stopped taking 5 months ago could suddenly attack my system in such a way? It's hard for me to fathom but I am quite ignorant when it comes to medicine & the ways of the human body.
That being said - Do you still recommend the Thiamin/Benfotamine? And do you agree with the regimen that Wings posted of Vit B12, B-complex, Folate, Vit E, Acetyl -L carnatine & ALA, SAMe, Cal/Mag, Fish Oil, Flax Seed, Milk Thistle, and CoQ-10? I just wanted to get your thoughts before I run off to the health food store and spend our life savings on supplements. :-) Sally also mentioned many of these things including 5HTP for sleep which I could dearly use. I'm willing to do/try anything to get an ounce of improvement as I feel my quality of life diminishing so fast. Thanks again so very much for your time!!!

The most important thing to do for statin suspected PN is
CoQ-10. Statins block our own production of CoQ-10 which happens in the liver. So replacing this is important.

Statins also block factors called remyelination nerve factors in the nervous system. Remyelination is fixing the myelin sheath of the axons (it is their insulation). There is some concern that statins may damage mitochondria in cells, as evidenced by the
muscle damage they also can cause.

The mitochondria use fatty acids when glucose is not available, and CoQ-10 and acetyl carnitine carry those across the mitochondrial membranes. Also magnesium is used heavily in this process.

Wing's list reflects just about EVERYTHING ever posted on our old forum before this one. It is not necessary to take all that in the beginning. It is more important to really look at YOUR life and choose things FROM that list that may help.

To remyelinate damage to axons, you need active B12, Active folate (methylfolate), and omega-3 fatty acids. People with the MTHFR mutation cannot methylate B12 and folic acid, and hence need these special forms. This mutation is common, so I expect people to show here with problems concerning it.
Without the DNA testing to show methylation errors, taking the methyl forms is just good insurance and no more expensive really.

You could start with a quality CoQ-10 at 100mg a day. These are new since he made that list. Qunol is one brand, that is solubilized, and so is Q-gel ( http://www.epic4health.com/qgel-coq10.html )

You could add in the acetyl carnitine and the improved ALA...which is called Stablizied R-lipoic acid, after say a month on the Thiamine and CoQ-10.
Taking everything at once, will cloud the issue if you respond because you won't know WHICH things are working and which you really don't need.

Wing's post is old...and many things have changed since then. Some nutrients have been improved by manufacturers to be more effective at lower doses. And not everyone needs what someone else found useful.

My goodness you are a wealth of information!! I seriously want to send you flowers or something!!
I will follow your lead & not go gung-ho & try everything at once... I am just so fearful that these symptoms are going to get worse & I was of the mindset that I would try EVERYTHING & then if I get relief I would start to wean things out to see what I could live without.
Ugh. This PN is a nightmare.