~~SUPPLEMENTS~~~ for Peripheral Neuropathy:
 

Supplements for peripheral neuropathy may be helpful for some people. Nerve tissue is like other tissues of the body, and requires various nutrients to support it and repair it.

There are nutrients that may be lacking in your diet. They may be depleted by another disease state (diabetes depletes magnesium), or they may be depleted by other drugs you may be taking. Many common drugs affect nutrient status of many things. I consult a reference for questions in this area, and urge people to seriously consider the drugs they are using, like blood pressure, antiseizure drugs, acid lowering drugs for GERD, some antibiotics, etc. The text I use is called the Drug Induced Nutrient Depletion Handbook 2nd ed. and is currently out of print.
There is a website with an abbreviated version of some of this data here:
http://www.chiro.org/nutrition/ABSTR...orticosteroids
Readers here can always PM me for privacy and details.

People may develop a need for supplements because of poor diet, depletion by illness or drug therapies, and genetic reasons which affect metabolism and various enzyme systems.

This thread is going to discuss the various supplements that have evidence published, that show how they can help.
Please stay on topic with this thread, and be patient too, since it is going to become a LONG read.

I am going to start with Vitamin B12, and Vitamin D. These two have had the most written about them, and are the most common supplements to consider for PN.

Vitamin B12: I have a long thread here:

http://neurotalk.psychcentral.com/thread85103.html

This thread is long and contains information about B12, how to choose it, what dose to take, links to medical data, and some discussion. B12 is depleted by some drugs, metformin for diabetics, and the drugs that control acid in the stomach result in the impairment of B12 absorption from food. There are now recommendations from NIH and professional nutrition groups that persons over 50 in US should take a B12 supplement, since aging can contribute to a deficiency of this vital nutrient.

B12 does not have an upper limit of toxicity and is very easily tolerated, and not expensive. So these 3 factors make it very easy to try. Also doctors tend to ignore it, and even when they test for it, may rely on antiquated lab ranges, and tell patients they are "normal" when they are NOT. There are medical websites to explain this, but I guess doctors don't keep up.
This is one:
http://www.aafp.org/afp/2003/0301/p979.html
If your doctor is one of "those needing education" you could print out this article from AAFP and give it to him/her. This article also explains how ORAL B12 can work as well or better than injectable. Suffice it to say, if you test below 400, you definitely need intervention. If you are at 400 or very close, that is borderline and with PN symptoms you could most likely profit by taking B12 as well to raise your level up. I'd suggest to be at least at 1000 for PN patients. Some people choose to go higher yet. Please consult my thread link to read how to choose a supplement for yourself.

Vitamin D: Vitamin D is not really a vitamin, it is being found. We typically get our Vitamin D from the sun, but with all the warnings out there about skin cancer, people are not getting the sun exposure they need for good health.

I have a thread on this too:
http://neurotalk.psychcentral.com/sh...hlight=vitamin

Within the last 5 yrs the research on this subject has exploded and now we have the medical community aware of how deficient Americans are with Vit D. Estimates are 50-70% have below normal serum levels, and some people with other illnesses are extremely low. My link has links to videos and other information about Vit D. And there are several threads about this at our Vitamin Forum with discussions.

We do not get much Vit D if at all from food. Some foods are fortified in US, but with amounts that are very small. So sun exposure is the main way we can get Vit D. It does not work thru glass windows either, because the glass filters out the UV.

Pediatricians are now giving D3 to children for example.
Low D impacts pain. There are studies now showing chronic pain patients need less medication when D3 levels are optimized. The direct link to PN is beginning, and I have one study on that thread to illustrate that. As time passes, we will see much more on this subject.

So because of this new data, I do recommend patients get tested to see where they are. The doctor's recommendations are still fairly antiquated and tend to favor D2 in high amounts once a week or once a month.(doctors also are not treating patients in the 30ng range--calling that "normal"...target range is now accepted at 50-60ng/ml) All of the experts do not recommend D2 (the Rx one) and suggest you use D3. Many of the posts over at our Vitamin forum here discuss this. The links I have in my D thread also discuss this. D3 is OTC (over the counter) and D2 is the RX one 50,000 IU and is RX because historically that is the only D we had for about 40 yrs! And that form appears in doctors' reference books so they prescribe it. In fact the use of D3 is more effective and preferred now.

edit 2-23-16-- links concerning vitamin D's role in preserving the GI mucosa:
http://neurotalk.psychcentral.com/thread232869.html
and
http://neurotalk.psychcentral.com/thread232831.html

Testing: This brings me to the subject of testing. It is rather dumbfounding that doctors may test you and then apply the wrong treatment. But one has to watch out for this problem.
With B12, using cyanocobalamin is now considered old information and better results can be had with the activated B12 form called methylcobalamin. Many doctors have no clue that this exists...and is very inexpensive. The same goes for treatment for D deficiency. All D3s are OTC including one 50,000 IU one.

There are blood tests for other vitamins, and interpretation of them is also spotty. Tests for B6, magnesium, thiamine etc really are only medically useful for very very low or very high levels. Using magnesium as an example--very low leads to cardiac arrest and muscle problems, and very high can be poisonous. But people may show "normal" ranges and have various medical problems that respond to some supplementation. Much work was done with magnesium and migraine a few years ago, with patients showing normal serum levels, yet responding favorably to extra magnesium given orally with supplements.

People who really understand testing, often use labs that do "intracellular" levels, and this is thought to be more accurate. Spectracell is one lab mentioned using this technology.
http://www.spectracell.com/

The same is true for B6. The reference ranges for that may be elevated if you are taking vitamins, but those elevations do not necessarily correspond to "toxicity" in any way. Autistic patients may show elevated B6 readings with NO supplementation! And people with a condition called pyroluria, may show very low levels in testing. B6 is a complex vitamin in that very low levels cause PN, and very high toxic levels also cause PN. So interpretation of serum tests may be problematic.
I have threads on our Vitamin forum specializing in magnesium and B6:

http://neurotalk.psychcentral.com/thread1138.html

http://neurotalk.psychcentral.com/thread30724.html

The following posts on this thread will include:
magnesium
zinc
acetyl carnitine
CoQ-10
Fish oil
B6
alpha lipoic acid
thiamine/benfotiamine
and others.

Vitamin D
 

This site has some good information on Vitamin D for both patients and doctors.

Pain Treatment Topics

The Patient Brochure and Practitioner Briefing at first appear to be written for musculoskeletal pain, but both also report an improvement in neuropathic pain. The Practitioner Briefing mentions this study:

The Full Report states the the pain levels (from trial) improved from 'distressing' to 'mild'.

.

a good link:
 

This is a good link to an alternative data base used by some Universities.

http://www.umm.edu/altmed/

This is its index with categories of information:
They do not list all supplements, but I consult this resource often because they are very complete on drug interactions with supplements and also depletion of nutrients by drugs.

They have a address that does not change, when you are in each special category, so linking there to specific screens is not possible.

Benfotiamine and Thiamine:
 

Benfotiamine is a lipid soluble form of water soluble common Thiamine (B1).

Historically B1 was the only treatment for neuropathy for many years. The typical dose is 100-300mg daily in divided doses.
Then the SSRI antidepressants emerged and also Neurontin (followed by Lyrica) and the treatment for PNs changed and doctors dropped the thiamine. This I believe is a mistake.

Thiamine is easily found in most grocery stores and pharmacies. It remains inexpensive as well. Starting just over a decade ago, this new form called Benfotiamine started appearing in studies.
For quite a while it was not available in US and then when it did start becoming so, it was ferociously expensive. That has now changed.

Here is an informative website on it:
http://www.benfotiamine.org/FAQ.htm

I find it affordable at iherb.com and I use the Doctor's Best brand. The website above endorses much higher doses, than I use and typically recommend. I think for many people 300mg a day is adequate. But we have had some posters here who used 900mg-1200mg daily. At that level, cost will become an issue for many.

I recommend benfotiamine for neuropathies that are not responding to B12 and/or Vit D. Also some people have metabolic problems with the genes that metabolize alcohol. These patients also can benefit from benfotiamine.

I'll also add that beriberi (thiamine deficiency) does occur in some patients and go unrecognized by doctors. This is due to taking some medications that deplete thiamine, like the strong loop diuretics. But it can be due to low dietary intake, high alcohol consumption, or a genetic flaw that then requires higher daily intake. Malabsorption from gluten intolerance/Celiac or inflammatory changes in the GI tract like Crohn's may also cause beriberi. The genetic issue is called vitamin "dependency" and occurs with other vitamins ---B6 for example. People with a vitamin dependency require higher amounts of the vitamin compared to the majority of others.
Here is a link to a medical site on beriberi:
http://emedicine.medscape.com/article/116930-overview

Since the link I gave at the beginning of this post, is very complete, there is not much more for me to say at this point, other than benfotiamine remains a good option to add to any supplement list you may be considering.

edit to add some more links from PubMed on this subject:

http://www.ncbi.nlm.nih.gov/pubmed/20188835

This study does give doses:
http://www.ncbi.nlm.nih.gov/pubmed/18473286
And does reiterate what I post that it takes TIME to show benefits. People often push the dose UP to get faster response IMO.

This is a chemical explanation:
http://www.ncbi.nlm.nih.gov/pubmed/18384109

http://www.ncbi.nlm.nih.gov/pubmed/18220605
Before gabapentin and SSRIs drugs, thiamine was the main treatment for PN. I believe it should remain high in the list for
any PNer and befotiamine is superior IMO. However, benfotiamine at one time was super expensive and few could afford it. That has changed in the last 3 yrs or so.
Thiamine remains inexpensive, but it makes some people have a body odor that limits its use.

This PDF gives some good data:
http://www.altmedrev.com/publications/11/3/238.pdf

This is an older paper:
http://www.ncbi.nlm.nih.gov/pubmed/16359659

This is from 1999:
http://www.ncbi.nlm.nih.gov/pubmed/10219465

I used to use thiamine in bursts. A month or two at a time, in the past. When Benfotiamine became affordable, I changed to it.
I only use 150mg a day now, but I started at 300mg in the beginning. I don't feel it is a cure...but it sure does prevent progression, and take care of alot of the discomfort for me.
I do think some people have a higher genetic requirement for it.

This one from 1996: Germany where the beginning studies originate.
http://www.ncbi.nlm.nih.gov/pubmed/8886748

Edit:
Here is a new link... discussing the better absorption and bioavailability of Benfotiamine vs thiamine:

http://www.ncbi.nlm.nih.gov/pubmed/8929745

Acetyl l-carnitine:
 

This supplement has been used for over a decade, for neuropathy that occurs in HIV patients taking anti-retrovirus drugs.

So that has spurred research in general. Here is a link with several papers about it:

http://www.integratedhealth.com/infoabstract/alcab.html

Also there are papers showing usefulness of ALCAR for patients undergoing chemotherapy treatments. For Chemo patients it is best to start the ALCAR before the treatments start.
edit to add 8-15: I am adding this information after seeing some critics of ALCAR not working for chemo neuropathy.
This new article from 2014 for example:
http://www.ascopost.com/issues/may-1...t-cancers.aspx

But then this 2014 article shows improvements in some chemo patients using carnitine:
http://www.sciencedirect.com/science...13231714000214
This link also has many interesting graphics to help explain the complex topic.

So each patient will have to do some research on whether carnitine is for worth trying for themselves.

end of edit.


This link to our PN board has a paper from 2007 on the usefulness of carnitine during chemo:

http://neurotalk.psychcentral.com/post507671-2.html

Our bodies make carnitine from the essential amino acid l-lysine.
But this conversion may fail or be affected by certain other drugs you may be taking. Most of the drugs for HIV affect carnitine levels. Also the anti-seizure drug, Depakote depletes this. There have actually been deaths from low carnitine levels induced by Depakote.

Most advice involves acetyl-l-carnitine, because the acetyl group may be used by the brain to make acetylcholine, a valuable neurotransmitter. Also Acetyl carnitine is slightly better absorbed than regular l-carnitine.

Carnitine supplements are not inexpensive. So if you suspect your PN is induced by drug toxicity, which may be affecting the mitochondria of the nerve cells (which make energy), then you can try it. There are limits to carnitine absorption in the intestines, so if you decide to use high doses (over 500mg/day) it is best to break them up and take them at different times.
Recently we have had some posters visit here saying their neuro has suggested this supplement. So information is finally getting to them.

Articles like this one 2010:
http://www.ncbi.nlm.nih.gov/pubmed/20302919

and
http://www.ncbi.nlm.nih.gov/pubmed/19768376

This study shows decreased pain in diabetic patients and even some regeneration of nerves in one study:
http://www.ncbi.nlm.nih.gov/pubmed/18940920

There are very few side effects reported with this supplement. In really high doses of 10 grams or more a day some GI upset may occur, since not all is absorbed and remains there. With the doses used for neuropathy, they are not this high, and the 3rd link above used 3 grams a day.

Acetyl carnitine is now being included in supplement mixtures targeting Anti-aging effects and improvement in Alzheimer's. Included in these mixtures are CoQ-10 and biotin, and sometimes alpha lipoic acid. I would use the carnitine separately to start, because high doses may be needed, and combo products do not allow for that --and become very expensive.

Regular l-carnitine is also on RX. If you can convince a doctor to give it to you this way, it may be covered on your insurance. (it is not acetyl form).
This RX form is also available OTC from the same manufacturer, from this source:
http://www.epic4health.com/lcar60cap.html
Some people feel more comfortable with this type, so I include the link to it.

Any questions are welcome here. You can also search the main forum below using the keyword "carnitine" and find many discussions.

Things I found that helped my peripheral neuropathy
 

Hi, I am new to this forum. I was diagnosed with peripheral neuropathy following an EMG the end of March 2010. All my blood work was normal except for a B12 of 190. (I had to insist that my neurologist even run a B12 test on me--he said he didn't think I could have a low B12 since I maintain a good diet.) My neurologist told me that 190 was not low, and I would not benefit from treatment with B12 injections. My husband and I insisted that a value of 190 was low and the neurologist begrudingly gave us a prescription for B12 injections. My husband fortunately was able to give me the injections at home. I started B12 injections as well as oral supplements on April 7. I also started acupuncture the same week. The burning in my legs was horrific. I screamed all night and cried all day. I had pain in my thighs as well. I could not sleep and was prescribed Ambien. I was able to sleep with the Ambien but also got very depressed while on the Ambien and quit eating, thus losing over 10 lbs in short order. I was then prescribed Paxil. I was spiraling down very fast and not wanting to live if I had to have this pain all my life and take all kinds of drugs to control the pain. However, by week five on the injections, supplements, and acupuncture my body finally began to rally. The burning and pain in my legs stopped and now the numbness in my feet and hands is almost completely gone. I was fortunate to have a wonderful support group of family and friends who prayed for me daily and I know that God has answered all our prayers.

I tell everyone I meet now to have their B12 checked. I am 58 years old and in good health. I have been treated for hypothyroidism for over 30 years and I now know there is a link between thyroid disease and malabsorption of B12. I also used Pepcid fairly regularly and had a high intake of caffeine every day, all of which prevent the absorption of B12. I have taken alcohol, sugar, and caffeine out of my diet.

Please do not let your doctor tell you that B12 is not a factor. Have your B12checked. I had to plead with my neurologist to even check mine and then plead with him to treat me with B12 injections. If you are below 500 demand to be treated. Now two months after being diagnosed with peripheral neuropathy I feel that I am about 90% recovered. Don't let them tell you your PN is idiopathic. Keep reading and doing research, be a strong advocate for your own health. If I had not done all this detective work myself regarding B12 I would be bed bound by now, on Lyrica, Paxil, and Ambien every day because my doctor said I was pretty much doomed and encouraged me to take all these medications.

The supplement I have been using is Nerve Support Formula which I purchased on Amazon because shipping is free. This treats neuropathy, no matter what is causing it. You have to take it consistently at fairly high doses for at least two months to get benefit. Their consultants are available all day to talk to you and help you individually. I think the combination of B12 oral supplements, injections, and acupuncture has pretty much healed me and I want to share my story with everyone. I am happy to communicate with anyone on this topic. There is help out there.

I am so glad you are getting better. Stories like yours continue to amaze me that doctors can be so ignorant of this simple yet vital nutrient!

That supplement you are using should be taken on an empty stomach, if you are not already doing so. The micrograms of B12 can be lost in food/fiber so empty stomach allows for the best absorption. You could also just use methylcobalamin orally and save quite a bit of $$, but that is your choice. I don't agree that your supplement would treat all forms of neuropathy however. That sounds like a sales pitch to me.
B12 and benfotiamine work for those low in those nutrients. Some neuropathies are autoimmune and have other factors that cause them besides low B12.
Some PNs are from direct toxic effects of drugs or poisons and may occur in people with normal B12 levels.

But in any event it is working for YOU...so keep up the good work, and I wish you the best and continued improvements.

My husband fortunately was able to give me the injections at home. I started B12 injections as well as oral supplements on April 7. I also started acupuncture the same week. The burning in my legs was horrific. I screamed all night and cried all day. I had pain in my thighs as well. I could not sleep and was prescribed Ambien. I was able to sleep with the Ambien but also got very depressed while on the Ambien and quit eating, thus losing over 10 lbs in short order. I was then prescribed Paxil. I was spiraling down very fast and not wanting to live if I had to have this pain all my life and take all kinds of drugs to control the pain. However, by week five on the injections, supplements, and acupuncture my body finally began to rally. The burning and pain in my legs stopped and now the numbness in my feet and hands is almost completely gone. I was fortunate to have a wonderful support group of family and friends who prayed for me daily and I know that God has answered all our prayers.

[/QUOTE]

I have chemo induced PN and take 5K mcg of B12 daily. I had started out having B12 injections on a weeky basis but switched to the oral form. I would like to know how often you do the injections and what the dosage is as I considering resuming injections.

I would also like to know which supplements you use besides B12. TIA

Mrs. D

What form of curcumin do you recommend. I recall on another post you saying there was a certain form you would recommend, but don't recall you posting the details. Thanks in advance

There are several enhanced forms of curcumin out there now.

Curcugel is affordable and I have used it.
There are also forms with Bioperine added, but if you take RX drugs I'd prefer you avoid Bioperine products until more research clears it as safe. Bioperine enhances absorption of many things, and drugs were not developed in dosing relating to it.

This is a long thread, but it has alot of information on it that is useful to help you select a product you can afford, and that will work:

http://neurotalk.psychcentral.com/sh...light=curcumin

The Parkinson's forum also has many curcumin threads, as they use it too. Some of theirs is more research oriented, but if you search there you will find plenty to read also. ;)

Regular curcumin that is not enhanced, will remain in the GI tract and act as an antioxidant there. Good for Crohn's, and other inflammatory problems localized to the GI tract.

resveratrol
 

Mrs D,
Do you know anything about the potential effects of resveratrol on PN?

I can only assume it would be helpful. That is if you get good quality resveratrol.

I think antioxidants are useful for PN...they quench free radicals etc. I take 300mg grapeseed extract daily, and krill oil has one in it too...to make it the red color.

And there are the studies showing simple Vit C in high amounts of 500 to 1000mg can prevent onset of RSD from surgery on the foot or hand. That is something to think about. RSD being a neuropathy of the sympathetic nerves. Why is not understood, but inflammation must be at the heart of that action.

So if you can afford resveratrol, I say give it a try.

Thank you MrsD.
I notice you have recommended Puritan's Pride as a source of supplements in many of your responses - does it have better prices than other providers?

Puritan's has better prices on some things, but not others.

For example with the sale going on now, for d-ribose (which is expensive), buy one get 2 free... I saved about $30. (over iherb)

They do raise their prices for "sales", but even then they can be a "deal". I used to get my grapeseed extract from them, but then Costco started carrying a nice softgel type, so I bought that last time.

After you buy from them once, if you give your email, they will send occasional emails, for free shipping + perhaps a $$ discount coupon. The buy one get 2 free is the major sale I use.
I don't think the savings on their other sales is as great. They only do this one once a year in summer typically. (If you save your catalogs from them, you will see they alter prices according to sales-- this bothers me somewhat, but I think you still save alot in the end.)

In the past Puritan's did not have the "newest" supplements, but I see that is changing. They now have methylcobalamin and the d-ribose which I had purchased at iherb previously.

I think their quality is fine. I've used them for years. But just not for everything.

Thank you Mrs. D
I have been taking Shaklee vitalizer complex but I'm putting together a list of individual supplements to take after reading this site. I have a few questions about either dosage and/or provider on a few of them. would you mind giving your input?
supplement

Sorry - I hit the wrong key

Supplement dosage provider

benfotiamine 300 mg/day - 2 doses iherb - Doctor's Best
methylcobalamin 5 mg/day iherb - Jarrows methyl B12 5000
P5P 50 mg/day iherb - Now Foods Coenzyme B6
folate 1600 mcg/day - 2 doses iherb - MetaFolin by Solgar
magnesium 1/2 of RDA WalMart - SlowMag 2/day
iherb - Ionic Fizz mag Plus
acetyl-L-carnitine 500 mg;/day - 2 doses iherb
grapeseed extract 300 mg/day costco
r-lipoic acid 600 mg iherb

These have questions
D3 5000 IU/day ?
curcumin ? epic5health - Curcugel 500
CoQ10 ? ?
zinc ? ?
calcium ? ?
glucosamine ? ?
omega-3 fish oil 1200 mg - 2 doses ?
d-ribose ? Puritan's Pride

I have not had any labs done on these levels - I am scheduled to meet Friday with the nurse practitioner of one of the two local neurologists who I have been told works with Neuropathy - can't get an appt with the dr until Oct.
I am in Mississippi. Do you have knowledge of doctos/centers in the Southeast - someone to recommend? I have read of Dr. Norman Latov in NY on this website. I want to take the best steps I can in dealing with this - these neuropathic symptoms of burning and pins and needles started within the last two months and it has taken a toll on my life. I am so grateful for this website - you have all given me hope and inspiration - thank you.

I am going to put my comments in red within your quote:
If I don't comment, that means okay.

I don't know of any doctors to consult ..others here may have ideas about that.

If you are postmenopausal, I'd use a vitamin product without iron. I don't know what is in your product, but there are many "senior" type products now, with minerals without iron. If you take a multi-- you probably won't need extra zinc.

Thank you! I just watched the vit D video you mentioned in another thread - it was very informative.
Thank you again!

I am a new user how do I post a question to this site.
 

I am a new user with perpherial neuropathy but I cannot figure out how to post a question to the site.
Debbie

You're doing just fine caldeb1, but you're in the 'tips' section at the moment!

Under here I've provided a link. If you click that link it'll take you to the main PN forum, and you can either reply to a thread already commenced, or start one of your own.

http://neurotalk.psychcentral.com/forum20.html

Towards the top, on the left you'll see new thread or post reply, depending on what page you brought up.
Click on that one and you're away!

Good luck, and let us know if you need any more assistance.

Granted, I skimmed through this thread rather quickly, but I didn't see anything regarding dosages for magnesium.

mrsD, can you provide a dosage range for magnesium? I've been taking as low as 600 mg and as high as 2200 mg per day, and I am still trying to find in the lowest dosage that will help with foot cramps.

Also, with spinach and broccoli as major components of my diet, I have limited myself to the 600 mg of calcium in my multiple vitamin. I don't eat dairy of any kind. Think I'm okay with 600 mg calcium?

Lastly, I'm unsure of the proper dosage for potassium. My multi vitamin has 99 mg. That seemed low, so yesterday I added in 300 mg on top of that. Almost immediately after taking the extra 300 mg. of potassium, I began to feel increased tingling in both big toes. Hmm.

Thanks.

Getting any benefit from potassium OTC supplements is like spitting in the ocean. We are supposed to get 4.5 grams a day from our food intake. Some foods are higher than others.
Cantaloupe has 1400mg or so in 1/2 melon.
A V8 has about 600mg.

An RX potassium supplement varies from 600mg to 800mg.
So 99mg tablet is nothing OTC. FDA limits higher numbers for OTC tablets. You'd have to take 6-8 tablets OTC to equal one V8 ( the low sodium one has more potassium than the regular).

www.nutritiondata.com gives mineral values for just about every food there is. When consulting this source watch the serving size...since some are unrealistic or misleading. Check what you typically eat and see how much of magnesium and potassium you typically consume.

But for magnesium 3 oz of unsalted almonds can give 270mg.

I don't think really high magnesium is needed. We are designed to eat a certain amount daily, and flooding your body with this is not natural. High magnesium intakes in people with impaired renal functions can lead to a build up in the body.

I have seen profound changes in people just taking 2 SlowMags a day! The RDA is about 400mg for an adult, elemental daily.

You can soak in magnesium...by making baths of epsom salts.
This lets some magnesium into the body where circulation may be impaired and so if mag has trouble getting to the toes and fingers.
Use lukewarm water, and about 4-6oz in a bathtub. When tiny blood vessels get clamped down, what you consume orally may not reach feet and hands. Once those vessels open up, nutrients can flow much better. (and toxins can be removed more efficiently). Magnesium baths are very relaxing to the muscles and can reduce pain too.

Remember when reading labels of magnesium products...some do not list contents in ELEMENTAL values. Some do. So a high dose of magnesium malate 1000mg, is really 150mg of magnesium elemental!

So if your cramping is confined to the feet do some soaks with epsom salts to get you relaxed and the blood flowing properly, then the oral can work better.

I've been on the below regimen of supplements for about a month and I am starting to notice some problems with constipation and/or slow moving bowels.

What might be the cause? Am I over-doing a particular substance?

Thanks.


Vitamin A 5000 IU
Vitamin B1 (Thiamine) 171 mg
Vitamin B1 (Benfotiamine) 150 mg
Vitamin B2 (Riboflavin) 60 mg
Vitamin B3 (Niacin) 100 mg
Vitamin B3 (Niacinamide) 60 mg
Vitamin B6 (Pyridoxine) 66 mg
Vitamin B7 (Biotin) 2598 mcg
Folate 1000 mcg
Vitamin B12 (Cyanocobalamin) 200 mcg
Vitamin B12 (Methylcobalamin) 3 mg
Vitamin C 1550 mg
Vitamin D3 4200 IU
Vitamin E 400 mg
Vitamin K 80 mcg
Magnesium 600 mg
Zinc 40 mg
Selenium 250 mcg
Maganese 13 mg
Sodium 130 mg
CoQ10 300mg
Copper 2 mg
Alpha Lipoic Acid 6000 mg
Chromium 250 mcg
Molybdenum 150 mcg
Calcium 748 mg
Potassium 100-400 mg
Glucosamine Condroitin 6 g.
L-Lysine 1000 mg
Acetyl L-Carnitine 1000 mg

I don't see anything on that list that is problematic for constipation. The magnesium and Vit C should be possibly loosening in fact.

But everyone is different. May be a drug you are taking?
Or some food? I notice that cottage cheese slows me down for some reason...but other dairy does not. I think that is weird but I have no explanation for it for myself.

Are you drinking enough water during the day? All those supplements do need good kidney functions, and low water intake would be stressful, and it can cause slowing of bowel transit.

I happen to be at the laundromat here on the free wifi...so you just caught me online! Still on vacation.;)

Thanks, mrsD! Hope you're having a nice vacation!

I eat mostly meat and vegetables. Currently, I'm adding some summer fruits, like berries. Also, I average approx. 2 bananas per day. I drink a lot of water, as well. I do not take any medication.

The only monkey wrench in the diet works maybe be the protein powder that I take approx. 4 days per week. Hmm.

At the risk of sounding a bit crass, what seems to be helping my husband most these days is eating two ears of corn a night! Since his PN has made it impossible to go, or know when he's going, we've had to balance a regime of suppositories, enemas, colase, senna, ducolax, miralax and even Lactulose. I also give him acidophilius when he's on antibiotics, all under MD Supervision and with damaged kidneys. He gets 1000 mcg of B-12 (cyan. type) per day too,

Correcting my previous post, it's the methyl type of B-12 (which I learned about thanks to Mrs. D's posts when I began this caregiving ordeal).

It's not crass and thank you for responding. I hope your husband is doing better!

I gather you are going for the corn because it's in season right now. Perhaps introducing a new grain into the diet is helping to get things moving in the digestive tract. The body responds well to variation, rather than the same thing over and over again.

Good luck and thanks again!

I am starting to wonder what to feed Randy when corn is out of season! It's already not having the same effect it was earlier!

One quick remedy for constipation is virgin olive oil.

1 or 2 tablespoonfuls will often work for many people.

B12 Injections
 

I've recently been diagnosed with sensory motor peripheral neuropathy and took B12 shots every day for 2 wks, then was told to have them once a month. My level to begin with was around 180. What should my level be now? I feel confident that my doctor instructed me appropriately, as he is actually the doctor who first wrote a paper and 'discovered' the link between B12 deficiency and PN, but I'm now wanting to question what my level is now, and what your "number" is for what may be optimal, considering your success with the treatment. I have been in a wheelchair now for 9 mos., am on Lyrica, Neurontin, Valprioc Acid, Pristiq, and Vicodin - all of which provide some relief, but only if I keep my feet propped up most of the time and rest with my hands elevated (my pain is in my feet and hands with all the classic symptoms). I've had 2 NCSs and 2 EMGs, all of which showed damage. I'm 39, non-diabetic, have had a normal MRI and lumbar puncture, tried a gluten-free diet, aspirin therapy, and next week I have an Evoke Potential test, and a nerve stimulator has been suggested, along with a neuromuscular specialist. Only thing not addressed so far, which I have repeatedly complained of, is an 'aching' of the bones in hands and feet - literally feels like they are broken at times, particularly if I'm late on taking my meds. Could B12 be more of a solution than what has been tried thus far? Also, do you have any suggestions regarding any other supplements?

Any help would be greatly appreciated - from you and anyone else!

Thanks,
Trish

Welcome to NeuroTalk:
 

With a very low level of B12 for a long time period... it may take a while to recover. If there has been permanent damage to the spinal cord from the low levels, there may not be 100% resolution.

This post link has a copy of the paper by Dr. Snow, which is from 1999. His take which I bolded there is that patients with neurological problems may have to be kept at higher than typical range for treatment, than most others:

http://neurotalk.psychcentral.com/post698522-70.html

The cut off in US now appears to be 400. But following Dr. Snow's advice, would mean you should strive for higher. I'd say at least 1000. You can reach that goal by taking oral properly.
5mg of methylcobalamin (which is the active form) daily on an empty stomach has worked for many on this forum.

Many doctors don't know about active form, being available and so hence they still use the synthetic which some people cannot activate in the body. That link above I gave, is from the B12 thread, which has medical links and explanations about the various treatments and reasons for them.

So please read it carefully, the whole thread, and perhaps then your path may be clearer.

???
 

Question or Suggestion...
 

I have tried to keep up with taking all of the supplements mentioned here for about six months without seeing any improvement in my PN symptoms. I keep wondering if there are key parts I'm missing. I've seen people list the supplements they are personally taking to have someone else review them, but not a definitive checklist to follow.

Does there exist somewhere here a comprehensive list of all the supplements recommended for PN with daily doses and preferred manufacturers? Liza Jane has a blank one for you to document what you've been taking, but not one for what you should take.

Thanks!

It is hard to say what everyone should take... everyone is different.

If your PN is resistant to improvement with supplements, I'd suspect a compression problem in the spine, or a hereditary PN.

The basic ones are B12 and Vit D. Once you get normal serum test results using these and still have PN...

Then
acetyl carnitine (starting at one gram a day in divided doses)
alpha lipoic acid 600mg a day or r-lipoic 100mg a day
benfotiamine 300mg a day

The first 2 target mitochondrial damage and the benfotiamine targets aldehyde metabolism (vit B1).

These are the back bone of the supplements.
A B-50mg a day, magnesium, zinc, are also important.
As as Fish oil (anti-inflammatory).

If you see relief using NSAIDs... then I'd go with anti-inflammatory things like the Fish oil, 3 a day, and grapeseed extract and or other antioxidants.

It might be worth going gluten free for several months, as this helps many also. Diet can be a big factor in PNs that don't resolve.

Thank you for your thoughts, mrsD

Let's just look at one of them for now--spine--I finally got my latest neuro to order an MRI:

Sagittal and axial views of the lumbar spine were obtained. Multilevel lumbar degenerative changes are seen in particular at L4-5 and L5-S1. There are small fissures seen at both locations. No bone destruction or vertebral collapse is seen. No subluxation is noted. No canal mass is seen.

The axial images demonstrate some diffuse disc bulging at L5-S1 with slight facet degenerative changes. At L4-5 there is diffuse disc bulge with a small slight central protrusion associated with a small high intensity zone. At L3-4 the disc appears normal. L2-3 demonstrates a small disc protrusion on the right. L1-2 demonstrates mild diffuse disc bulge.

Impression:

Some degenerative disc changes are seen in particular L4-5 and L5-S1 with a small high intesity zone is at L4-5 and a small high intensity zone seen at L5-S1.

My neuro has not commented on this, so I figured that the above just means that I'm 54 with high milage and what else can you expect? I thought that if it were something serious, he would have contacted me. Do you or anyone else who is reading this know how to interpret this?

p.s. this MRI was with no contrast because the tech who did it couldn't hit my vein--they didn't tell me there was going to be an injection so I didn't drink much liquid that day, thinking it would be better to not have to urinate while in the MRI machine.

I think you'd need an orthopedic or back doctor to interpret that test.

There is a Dr. Sarno, in NY who feels that some people channel anger/stress into their backs. He has a program to fix this without surgery. He has written several books, including Mind- Body Connection. I've seen the TV programs he was on!
http://en.wikipedia.org/wiki/John_E._Sarno

I have his book, and in it is an evaluation of testing accuracy. He says some people with horrible back Xrays/MRIs have no symptoms or few symptoms, and some people with more or less small changes can have large problems.

I tend to agree that most people can show spinal problems as they age.

I think another medical evaluation of your test may help.

(if you don't have PN anywhere except your feet, that MAY mean your back is the culprit. Most metabolic PNs are all over, hands etc. That is not to say it couldn't be metabolic and only in your feet, like maybe it has not progressed yet, but it is sort of a hint.)

Thanks mrsD. I just thought that maybe you or someone else here had experience with MRI reports and might spot something in this one that could cause PN. I do have neuropathic pain in both feet and also legs, depending on good vs bad day.

Hi Trish, I can feel your pain as I almost have the same thing going on in my body. I only take Lyrica and Tramadol right now. If I learn anything I will be glad to share. I am curious if I need to beef up the B12 and do the shots verses just a vitiman suppl. We can only hope that something will work. You hang in there and I do the same.

Rick

Ribose
 

I am going to put information here on d-ribose.

I've been using this since I made the thread here:

http://neurotalk.psychcentral.com/sh...ghlight=ribose

I am not really sure what if anything it does for PN yet, but it does seem to lower pain levels for me, give more stamina and
clears my mind of the occasional brain fog I tend to get, and also
really helps me with improving sleep.

I use it at night.

It does run about $30.00 for a 45 days supply if you stay under 10 grams a day. At 10 grams a day one 8 oz tub lasts about 24 days. I found it at Puritan's for a good savings, when they have their sales.

I'd suggest starting slowly, at 2.5 grams (1/2 scoop) daily until you see how you react to it. At that dose I was taking NAPS for about a week or so. Then that effect becomes less, and you sort of normalize your metabolism of it and more must get sucked up into the cells for energy production. When adenosine is outside the cells, it is the signaling molecule for initiating sleep.

The powder is very moisture loving...and will attract any moisture in your house. So I keep my open tub tightly closed and in a Ziploc freezer baggie in between doses. I kept it sealed at our summer place which is always 80+% humidity at the lakeshore.

All in all if you have severe fatigue, have a possible fibro diagnosis or muscle weakness...this supplement is worth a try.
It is very slow in onset so you really have to give it a month or two at least. It is the slowest supplement I have tried in fact.