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 :-)

Hi mrsD, I just found this board and joined. My wife is two years from her diagnosis of Guillain Barre Syndrome (GBS), with peripheral neuropathy ever since. At least, we were told that's what she has. From reading here, I'm wondering if PN is right. Nothing has worked to even put a dent in her PN pain, but maybe we've been going after the wrong thing? Your posts make sense to me, and I'd appreciate your opinion.

Your post intrigued me:
Early on, we were careful to have a regimen of B-complex vitamins for her, but after a month or so, there was no change in the pain level, and my wife no longer takes the vitamin supplements. We continue to search for an effective treatment.

My wife's GBS left her with axonal damage, confirmed by nerve conduction studies. Although she has regained most limb movement, she has never been able to rid herself of the full body pain.

Do you think she does not have PN, but something else? If her pain is PN and can be treated with vitamin supplements and the like, what have we been doing wrong? She is in constant agonizing pain, and we've seemingly tried everything. Do you have any thoughts on this?

thank you,
Dave

--has she been tested to see if she has chronic inflammatory demyelinating polyneuropathy (CIDP), which is often considered to be the less acute onset, lingering version of Guillain Barre (though there is some overlap in possible presentation)?

There are some people who have what appears to be a Guillain Barre episode but the damage lingers for far longer, or they plateau in recovery and do not get any better from that point (unless, sometimes, from immune-modulating therapies such as IvIg). And CIDP can have an acute or sub-acute onset, and then have a relapsing or remitting course, almost like a peripheral nerve version of multiple sclerosis. Many researchers think of Guillain Barre and CIDP as similar processes along a continuum in terms of onset and effects.

I'm not saying proper nutrition or supplementation won't help--these are good ideas for any of us with any condition--but depending on where evaluations are done and who does them, all options may not have been considered. It does sound as if your wife could use a work up at a tertiary center that specializes in neuropathy and neuromuscular conditions.

Take a look at:

http://neuromuscular.wustl.edu/antibody/gbs.htm

http://neuromuscular.wustl.edu/antib...mdem.html#cidp

Yes, Glenn is good at explaining the details of this. Thanks as always, Glenn.

GBS is typically treated today with IVIG... and is considered an autoimmune type of reaction. In the past before IVIG was available GBS was treated with plasmapharesis ...where the blood is taken out of the body and spun so the antibodies fall out of the serum and then it is put back. People with myasthenia gravis sometimes still have this treatment.

GBS often follows an infectious illness, say food poisoning with Campylobacter bacteria in undercooked chicken or other meat, or a virus. Some modern vaccines have a disclaimer warning on them the GBS may follow injections of these vaccines.

CIDP and GBS are autoimmune illnesses, and treated as such.
All the supplements we discuss that enhance remyelination, may be helpful to healing. But if the autoimmune process is not suppressed, supplements won't be able to keep up with any healing needed.

All the best to you & your wife sddave. I can sympathize with her pain, being in the midst of it myself. It's a horrible feeling to never be able to get completely comfortable & to have life's little things taken away due to pain (I never thought I'd miss doing laundry!) Please know that my thoughts are with you & everyone suffering from this puzzling ailment. I'll be sure to keep you all posted if I have any success with my new vitamin/diet regimen.