Success Stories?
 

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!
 

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.

http://img.photobucket.com/albums/v4...sillybunny.gif

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.

When you drink alcohol..... there is an alternate metabolism in the liver to convert it. It is slower than glucose metabolism, and therefore, when you stop drinking, that is a shock and it takes a while to shift from that process to a different way of handling glucose.

It is explained in this medical video:
http://www.youtube.com/watch?v=dBnniua6-oM
about 1/2 thru this video is the liver metabolism explained.

It also reveals why sugar (which is 1/2 fructose) is so damaging.
It is a long video...but well worth it.

So when you stop drinking alcohol, you then crave sweets. This is very common in rehab situations. Increased carbs then need increased thiamine because thiamine is involved in their metabolism. During the first month or so, giving in a bit, will ease the increased perception of PN... but eventually you will have to cut way back on sweets/sugar.

Alcohol is also a blunter of pain and perception. When you don't have it anymore, you feel things more acutely. Alcohol is actually classed pharmacologically as an anesthetic, and was used heavily in the Civil War, for pain, when opium was not available, and earlier in fact all thru history. So I don't think your PN is necessarily worse since you stopped drinking, only more obvious.

You can add in a good Bcomplex. B-right by Jarrow has a long track record here for being sensible and useful, and quality.
It is not expensive and doesn't have too much of any one thing in it to be worrisome, and has the methylated folate now too.
http://www.amazon.com/Jarrow-Formula.../dp/B0016003Z0

I'm wondering if I should take a B vitamin at all as my last blood test in January showed high levels of B12. 1694 to be exact.

I just got the CoQ10 from my chiropractor. He did not have any Thiamine or Benfotamine in stock so I'm off to GNC. Do you think that they have a good enough quality brand? If not do you have a brand recommendation? Same with the acetyl carnitine and the Stablizied R-lipoic acid... any favorite brands? I hate to wait for something to come in the mail but I will if you deem GNC brands to be junky.

Thanks again for your time & the links!!

GNC is not likely to have Benfotiamine... and GNC is one of the highest priced outlets there is.

I use Doctor's Best brand, and get them easily at a huge discount from Amazon.

NOW makes an affordable acetyl carnitine. That you may find
locally.

In general you will pay 2 to 3 times more locally for the same things exactly as you would online.

If you were taking B12 when you had the testing done, and did not stop about 7 days before the test, then your level does not reflect much information. It only reflects what is in the blood at the time of the test.

If you did not get the new solubilized CoQ-10, you will need at least 300mg a day or more. The new versions are far superior to the older ones in oil.

Stabilized R-lipoic is rather new... very difficult to find locally.

The B-complex is mostly for the riboflavin and B6. Riboflavin is the cofactor to activate B-6 to pyridoxal 5 phosphate which is the active form in the body.

Thank you!
This is the CoQ-10 I got http://www.amazon.com/Ortho-Molecula.../dp/B000M5JVJE
Is it up to par (solubolized)? I'm not sure what that means & it doesn't say anything about it on the label. Doc told me to take 2 per day.

Thanks for the B vit info. Interestingly enough my doc had me stop taking B6 vitamins when this flared up saying that too much B6 can have negative effects on your nerves??

Finally - wondering what your thoughts are on Evening Primrose. I started taking this http://www.gnc.com/product/index.jsp?productId=2133879 a few days before finding the support group because I read that it can help with PN & it has 100mg GLA. I've been taking 2 per day.

I'm SO sorry to keep bothering you. But every-time you reply I think of something new. I wish you were my doctor!! :-)

Hi jcgrome
 

Hello. You asked for success stories. I also have PN, from two surgeries on my ankle. It went up my calf. I started on B vitamines including b12 shots over a year ago now. I have definate improvement with this condition. Still numb in areas, but some of the ouch of the pins and needles is gone. I am still hoping for complete remission. I see a physiatrist, who is treating me with pain issues. I wish you all the best. ginnie:hug:

Yowsers! That is expensive and nowhere claims solubilized form. Evening primrose is okay, and best taken with other Omega-3 fatty acids for balance in the body. Years ago it was highly recommended for diabetic neuropathy, and some people here have used it. I used it when I first started Omega-3's a decade ago, but dropped it after about 2 yrs, as it didn't seem necessary anymore. Once your Omega-3 ratio changes for the better, the other fatty acids come back into balance eventually.

I have an Omega-3 thread here:
http://neurotalk.psychcentral.com/showthread.php?t=6092
There are many "smart foods" now with Omega-3s added, so I use them less in supplement form now.

To compare with your OrthoMolecular product:
120 Qunol 100mg (solubilized for better absorption) is about
$35.00... and is a 4 month supply. It appears that your product is the old form... so I can't offer up how much of that will actually be absorbed.

One thing I do here is find affordable quality products, because most people cannot afford to spend so much.

The "nerve" damage from B6 starts from 500mg or more a day for years. In reality there have been very few people proven to even have it. Recommendations sometimes go very conservative but 100mg a day of B6 is typically the highest I will recommend. I never used more than 50mg a day myself.

Pyridoxine in vitamins is not active you know. It has to be activated in the liver to pyridoxal. So the quality products now have it in that form to some extent today. The cofactor in the enzyme to activate pyridoxine for of B6 is riboflavin. B2. Riboflavin also contributes ribose, to the cells which make ATP from it. Without ribose, there is less energy production.

This is the Qunol website:
http://www.qunol.com/

(Just a hint...things sold thru chiros or naturopaths, tend to be highly
inflated in price.)

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

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.

MrsD - you aren't kidding!! Amazon's prices are amazing! Thanks for saving me a good portion of my life savings :-) I did pay a ridiculous $20.00 to get them all shipped over night but I can't wait a day longer to try to heal myself.

I know that you recommended just doing the Benfotamine & CoQ-10 for a month to see if there is improvement before trying the ALA & R-Lipoic but I can't wait. I'm going to essentially bomb my body with nutrients & if I get any improvement (hope! pray!) then I will slowly wean things out. I know it's the more expensive route but my symptoms are WORSENING! Every single day something hurts more or the pain goes to a new part of my body. And I am on a wait list thru October to get into the Neuropathy Department at OSU. I'm terrified of being in a wheel chair or something by then :-(

So other than thanking you for the guidance - I wonder if you might pleae take a second to tell me what dosage of my new supplements I should be taking? Thank you in advance. SO MUCH!!!

Doctor's Best Best Stabilized R-Lipoic Acid Featuring Bioenhanced Na-RALA (100 mg), Vegetable Capsules, 60-Count
Sold by Amazon.com LLC
$16.29


Jarrow Formulas Acetyl L-Carnitine 500mg, 60 Capsules
Sold by Amazon.com LLC
$12.09


Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
Sold by Amazon.com LLC
$13.99


Folic Acid B12 90 Tabs
Sold by ProLine Refills
$15.00

I will highlight your quote in red for my comments... easier to understand that way...;)

I used to use iherb.com for many years. At one time they were the only place with the more unusual supplements like methylcobalamin, etc. But now Amazon has them all that I use and the free shipping is lower at $25. We often shop for other things at Amazon..cat toys, a music CD every once in a while, and hard to find tools/kitchen things. I even found some seeds on Amazon once! Our young cat loves the plastic springs that come 10 in a pack. She carries them around the house and plays for long periods of time with them! Sometimes yowling her catch with glee! ;)


Give the supplements a good six months. If you see NOTHING in the way of improvements, that would point to a hereditary PN. But most of our members do see something change. Keeping a journal may help, if you're up to that. Drink enough water, to keep hydrated, which is always important when taking supplements.

Hi Jcgrome,
I totally understand how you miss doing laundry! I never thought I would miss it either. I miss a lot of things that were taken for granted before I became sick. Most of all working. Carrying my granddaughter is another. She is getting to heavy for me.
What I do every morning is remind myself to Thank God for what I do have. Some days it is difficult but most days I do it as soon as I open my eyes. That is usually when I take a second and say yes the pain is still there. Then say thank you for other things!
Hopefully, one day we will all be pain free! :)

MrsD here is the link for the Folic Acid combo. I really can't tell you how much your guidance has given me hope. Thanks again!!

http://www.amazon.com/dp/B0006M0A8O/..._M3T1_ST1_dp_4

Oh, my....

When you are done with this, please contact me for some good brands of methylfolate and methylB12.

The other ingredients in this product are giving me some heebeejeebees right now. :o
Bovine sources of tissue which may contain nerve tissue can be a vector for mad cow. I avoid all those products for that reason.

If you have intact intrinsic factor the B12 6mcg may work.
If you have no methylation errors, the folic acid may work.

After many years online it has occurred to me that people who show up on internet forums have some "problem". Today with our new DNA tests available, we can see the problems can be a common mutation in methylation. So one person with intact MTHFR enzymes can methylate folic acid properly. And not likely show up here. All the others, end up with obscure problems tied to methylation failures, and end up with PN and other diseases/symptoms.

The test can be done today without a doctor, and the price just was lowered:

https://www.23andme.com/

So do you think I should skip it? I don't want to do anything that might hinder my potential healing!! Why would they add all that stuff in??

And it all just arrived... less than 24 hours after I ordered it! Amazon is amazing....
And speaking of Amazon purchases, if your cat is anything like mine you don't need to buy it toys... give her the ring off of a gallon milk jug or a pony tail holder. Either one is worth hours of entertainment around here :-)

And why would I need a DNA test? I'm confused about the methylation stuff :-)

Hi Glenn, thank you for your information. Approximately 6-8 months after onset, our doctors decided it wasn't CIDP, and confirmed GBS. Maybe they were wrong. In any case, IVIG was given many times in the first few weeks after onset, as well as plasmapheresis, but neither one since.

It is so frustrating to see Web sites on GBS that talk about IVIG like it saves the day, and then say most patients "have a full recovery" thereafter. Grrr! I suppose a diagnosis of CIDP might call for a course of IVIG treatment, months or years after initial onset? I'll inquire of our pain doc.

Thanks!
Dave

Hi mrsD, thanks for your quick reply and info. In fact, my wife did get IVIG, as well as the plasma, in the first few weeks after initial onset. Nevertheless, she did have full body paralysis and was put on a ventilator. After about six weeks, she was off the vent. After about four months, she came home. After about eight months, she could walk again. But always the pain! Gabapentin, Lyrica, Oxycodone, Neurontin, nothing has done anything for pain. Hers is a difficult case.

I will try to get her back on full vitamin supplements etc. to approach from that direction, while seeing what meds our pain doc comes up with next. *Sigh*. And I'll ask again about GBS vs. CIDP diagnosis, and what effect that conclusion might have on treatment.

Thanks, I'm glad I found this board and the people who contribute their expertise/experience!
Dave

MrsD - just wanted to let you know that my Doc agreed with you regarding ditching my new Folic Acid/B12. She has me taking this instead http://www.pureprescriptions.com/nut...FQjf4AodUh8A1w
She also suggested I take my Magnesium transcendentally so I guess my new Cal/Mag was a waste of $$ as well.
She also gave me Inositol & L-Glutamine powders to take before I exercise, go to sleep or if my pain is very strong.

At this time she feels that my Neuropathy is in relation to vitamin deficiencies exacerbated by alcohol consumption. She said that with my new diet & supplements I should be feeling better in a week. If this is true I will be over the moon but I'm trying not to get my hopes too, too high. If it does work I will come back & list every single thing that I've done differently. Right now I need to find myself the largest pill organizer thingy ever known to man!

Thanks again for everything....

ssdave - I really encourage you guys to try the diet/exercise/supplement approach. Even though I am not fixed yet I have been reading so much lately about how the body really wants to heal itself, we just need to give it the right tools to do so. Our culture pushes poison, whether it's in the grocery store isles (food & household cleaning/personal care products) or at the pharmacy. In America something has to be proven to be Harmful before it will be investigated & potentially pulled from the shelves vs. Europe & many other countries where products must first be proven Safe before they are allowed anywhere close to being distributed/sold to the masses.
We have to educate & take care of ourselves. It's tedious, frustrating & sad... but getting toxins out of our homes & bodies is key to healing.
Thankfully we have the internet & intelligent, helpful folks to guide us along the way.
Additionally - in my (albeit brief) research of this world of PN I have found many studies/testimonials where individuals have found relief with magnet therapy, acupuncture, the Rebuilder & Anodyne therapy. I understand that everyone reacts differently to every potential solution but these are drug free things that are high on my list to try should my lifestyle changes not make a dent in my current PN situation.
Peace!

It has been found that many people have this error, and cannot methylate B12 and folic acid to their active forms so they can work properly in the body.

Let's look at numbers. It was thought 10% at least have this error (called MTHFR polymorphism), but now the number is increasing and up to 30% is now suggested by some new research.

What does that mean? Take a stadium full of people. Average size now is 100,000. 10% would be 10,000 in that stadium would have this genetic error. One of the first signs of inadequate B12 is neurological. Over time having low B12, would lead to insomnia, elevated homocysteine, and damage to arteries and hence cardiovascular events. Anemia comes rather late in low B12 patients. But it does arrive eventually.

If you have this error, your body cannot perform certain functions. When long standing, it affects the spinal cord and is called :
http://en.wikipedia.org/wiki/Subacut...of_spinal_cord

This happened to many thousands of Japanese in the early '70's from common use of a drug called clioquinol. (it was taken off the market here at that time). Hence the Japanese have done much research on B12 and as a result have a higher cut off for "normal" than our 400pg/ml. Many people in Japan died or were permanently maimed/blinded by this event.

We know about the methylation issues now, but 15 yrs ago it was not common knowledge. The work on the human genome has been one reason we have more understanding.

Methylation is the moving of a --CH3 group around the body to do many metabolic jobs.
http://en.wikipedia.org/wiki/Methylation
If you search "methylation" on Google you will find quite a bit of
complex chemical papers and sites. But here we deal mostly with the methylation of B12 and folic acid.

Remember we are chemical factories. And mRNA delivers information to the cells, to make new compounds to do many jobs, and this involves that methyl group (one carbon and 3 hydrogen molecules).

Hi Mrs. D.
Do you know if 23andme test for CMT. I was on the link but can't seem to find anywhere what exactly they test for. Maybe I'm missing it?
As always Thank You:)

I think you will have to contact them and ask.

The DNA typing only looks at certain parts of the genome.

23andMe does do Parkinson genetic testing. Our PD forum participated in that a while back. But for details, you'll have to ask them.

There are "levels" of inquiry with different prices there.

Athena Diagnostics are the only ones who test for most all of the types of CMT. And there are many and if you have to test for all of them it is very expensive. They have a patent on them. www.athenadiagnostics.com. You can give them a call and they are more than willing to answer any questions you may have.

They told me that Baylor University out of Houston, TX tests for some of the types of CMT. However, they use a different methodology (way of testing) than Athena Diagnostics.

*edit*

Hope this helps.

The the original poster, I feel that I am in the same boat and just want to extend my sympathy.

I have L carnitine and alpaha lipoic acid but I find that you guys discuss different kinds here on the forum. I hope I haven't wasted my money completely. I can't seem to find R lipoic acid in the health food stores
just a note - Inno-Vite makes a complex with Co q10, vit E, Carnitine, and vitamin C
Its quite expensive ($32 Canadian) my sister bought it for me as a gift. I took it for a while but didn't feel results so gave up and started on the alpha lipoic acid again.



Sigh...everything is so hit or miss isn't it. Good luck :hug:

When to take COQ10 and other supplements.
 

I suffer from idiopathic peripheral neuropathy, was diagnosed 3 years ago and have refused taking Lyrica. So far I have no pain to speak of but the numbness that started out in my toes of both feet have now spread to the feet. I take no medication. I have heard much about R-Lipoic Acid, L- carnitine and Ubiquinol. When does one take these supplements, before or during or after meals ?
Anyone with success stories, please share. I know there's no cure for this disease, especially when it's idiopathic.

The cause of a neuropathy simply means that it cannot be identified and is therefore labeled idiopathic neuropathy.

Yes, idiopathic just means they do not know your cause. You might find a cause if you find other doctors.

Start with diet and cutting sugar and junk carbs, check the A1C in a blood test. Also, you can check glucose level after meals at one hour and two to see what foods you need to stay away from. Potatoes, sugary drinks, rice, breads.... Even if blood sugar level is always good, cutting these are always good for the nerves.

Cutting out gluten is good to do also.

If you find an integrative MD that knows the blood tests to give, supplements and diet information, it would be great. So many things you can test for with vitamins, etc.

Always stay hopeful. Everyone is different and taking good supplements, eating VERY good, organic foods, greens, not eating junk, staying away from chemicals like things you spray in the air, cleaners, etc, meds that might be a problem... all kinds of things we can do to help the nerves get rid of toxins, get circulation and blood flow so toins can be carried away. We can just do all that is possible. Minding my Mitochondria is one book I really like.

Learn all you can about nerve health. This is a great place!

Hello my name is Angelique,
I have been an LPN for over 12yrs. I started getting odd symptoms last Aug. I was sent everywhere everyone was stumpted. I left work on sick leave. My last hope was the Mayo clinic. It took 12 days but they found it. I have an aggressive form of pots. Now I an getting to the helpful
part since most docs are not sure how to treat us sometimes We have to think outside the box.I have 10 herbal books on anything from cooking,cleaning and health treatments.
Now always check with your doc first. You may have to give him or her the information about what herb you want to use most docs have to focus on scripts. So they need to know what you want to take,why you want to take, and dose. Now from other sites I have heard that a root called witches broom helps with the mood swings. valerian root helps with sleep. Since I live in IN it can be difficult to find what I need. But Chicago has a large herbal shop in China town. The owner is a doc plus trained for many years for herbal medicines. If you can find an herbal expert thats great or a Md even better but if the person just owns the store be careful herbal drugs are just as dangerous as scrips drugs. Some just do not mix. Just
educate yourself.I want to stress that you need to keep the Doc in the loop.
Hope this helps a little