MrsD thanks for your suggestions
 

MrsD,

Thank you for your suggestions. Responding in order:

1. I had my second visit with my neurologist yesterday. He had previously run a very extensive battery of blood tests, and he went over the results in detail. I am normal on everything and there must have been a hundred or so factors tested. B vitamins are fine also. His best guess is that since I had borderline diabetic blood sugar levels six months ago, that is the likely culprit. I have been dieting and exercising since the first of the year and am now down more than 40 lbs. and 60 on the blood sugar count. That plus Neurontin (you folks in this support group tend to call it gabopentin, I believe that's the generic name) seem to be offering me relief. He upped my Neurontin from 3x300 mg/day to 3x600 mg/day. But I am DEFINITELY FEELING RELIEF!

2. I read your link on alcohol and PN and it, like other research I've read, seemed to focus mainly on alcoholics, not just regular social drinkers. It also mentioned the poor diet that may be associated with alcoholism, and the resulting impact on blood chemistry. Since I am getting relief as noted above, my blood work is all spot-on, and I enjoy my couple of shots of alcohol nightly, I don't plan to quit or curtail it at this time.

3. My neurologist was fairly neutral on the subject of Benfotiamine but was not opposed to trying it. It's a lot more affordable that the Neuropathy Support Formula that I initially asked you about, and doesn't have the huckster marketing that the NSF product has. I've ordered two months' worth and was pleased to see that it can be had in bulk for under $100/year. I'll hold off on the lipoic acid and Biotin for now, but might try adding them in later.

I will advise how all of the above works!

BobL

I know I sound like a pest... but you really need the actual B12 numerical result. Do not accept "normal" because in US the lab ranges are out of date and report lows as normal which the doctors then tell their patients. So therefore a level of 250 will be not flagged in US, however it is a seriously low level biologically.

You need to be at least at 400 US units. This level now appears in medical websites targeting doctors, for continuing ed.

Alcohol metabolism results in formation of by products which in some people are toxic. These are primarily aldehydes. So you don't have to be a heavy abuser (which often has poor diet associated), to have reactions. This is why the benfotiamine is useful for those drinkers. There are also congeners in it which people may react to.

http://banderasnews.com/0506/rr-congeners.htm

Also chronic alcohol use (doesn't have to be heavy) will have that diuretic effect and therefore cause losses in magnesium.
So taking a good magnesium supplement or eating foods rich in it may help. Poor magnesium levels are implicated in PN symptoms (nerve malfunction) in some people, and are very bad for health because about 300 systems use it as a cofactor. Estimates are that about 70% Americans are low in this vital mineral. Do not accept magnesium OXIDE however, as it is not absorbed, and is basically a laxative.

I am still soaking my feet in warm water with epsom salt every night. Then, I rub my feet and legs with epsom lotion after soaking.

I also rub my neck down to chest (I think that my shortness of breath maybe caused by some tight chest muscles - this is pure guess on my part). I rub my hands with epsom lotion as well.

With all the soaking and rubbing, do you think it might just be better if I take magnesium supplement? As you know, I have been taking so much supplements, I dont want to stress so much my kidney and liver, that is why I was avoiding taking another supplement, but if it is better taking it orally, i might have to reconsider.

Thank you.:hug:

BobL,

With 1800 mg/day, dont you feel any side effects like sleepiness, brain fog, memory lapses, etc?

I am on 1200mg/day and it makes me very sleepy. With this dosage, it gives me a 2-3 hours pain free on some days, but on some days, it does not effect at all.

It is good that its working for you very well.

[QUOTE=BobL;88655
That plus Neurontin (you folks in this support group tend to call it gabopentin, I believe that's the generic name) seem to be offering me relief. He upped my Neurontin from 3x300 mg/day to 3x600 mg/day. But I am DEFINITELY FEELING RELIEF!


BobL[/QUOTE]

Mrs. D...
 

Mrs. D,
I had listed the supplements I had been taking so you would have additional information when asking whether you had any thoughts or ideas about causes for the groin and leg pain that started a few weeks ago.

It is happening every few days. This is new and not sure what may have started this painful ache. Hard to describe; possible muscle pain? Like I mentioned previously, this is from the groin down the whole leg; especially the back of the legs; but right and left groin areas as well. It has made walking, at times very difficult and getting quite concerned. I have not added any new prescriptions or supplements.

I would really appreciate what, if any, suggestions or thoughts you may have.

Gerry

I think groin pain is possibly hip pain. If it is in the back it can be also sciatic pain or sacral arthritis. If you have a lower back issue, you will also feel pain down the backs of the thighs.

When I fell several years ago, I damaged a tendon in the thigh, called the adductor. This tendon attaches to the bottom of the pelvis. And let me tell you...when that tendon flamed up I was unable to walk, lift my leg, roll over in bed, and the only pain relief I had was aspirin! I couldn't even dress myself! Aleve didn't work. It hurt sitting, walking standing lying down...everywhere!

I still get minor aches there which I use my magnets for. And I had to do 3 months of PT for it.

Here is a link with illustrations. Hip pain is complex and can also be due to bursitis:

http://www.aafp.org/afp/2000/0401/p2109.html

Pain in the groin can also be meralgia, but that is typically down the front of the thigh only. Not in the back of the thigh.

If your pain continues, you'll have to see a doctor, for this, I think.

If you can take aspirin, try some AlkaSeltzer original formula.
If it works then it points to an inflammatory cause.
Just sitting on high stools, or "director's chairs" can put a strain on the lower back for some people. So you might not even think of that as a trigger etc. And you can herniate a disc anytime!

I have just started ramping up from 900 mg to 1800 mg so I can't comment on the higher dosage but over a month at the lower dosage did not bother me at all.

Thank you for the reply.
I hope you could post sometime in the future, if the dosage continues to work for you and the side effects, if any.

Keep well.

I would like to please remind some posters here that this is a
thread about supplements. Please try to stay on topic.

We do have a thread to discuss the MEDICATIONS used to help with PN symptoms.

This is the link to it.
http://neurotalk.psychcentral.com/thread161040.html

I am bumping it up today to page one, here, so it will be easier to find. ;)

Mrs. D.
In November, it will be 6 years I had lumbar spine fusion/laminectomy. Also doctor said nerve was badly crushed (said he never had seen such a red angry nerve like this before).

Eventually went on narcotics for pain which caused terrible constipatation (take daily laxatives) leading to my bladder coming down (Cystocele surgery; bladder in Mesh Sling), following year, small bowel came down (Rectocele Surgery). After bladder surgery the PN pain really got even worse and developed edema as venuous stasis; feet, legs and ankles.

This groin pain, along with leg pain (do have in front as well as back of legs) just seems more prominent back of the legs and behind the knee cap area. As I mentioned this has made walking even more difficult. Since I have had pain from the waist down to the toes, this pain is something new and different from what I have been dealing with all along. I had the siatica pain before fusion and this does not feel the like that.

I will look up more info on bursitis of the groin. Do you think this would affect the legs making walking even more difficult? This is both legs and both side groin pain.

I did see Pain Specialist's assistant about a week ago and mentioned this pain. She thought it might be muscle pain. I do take vallium, along with narcotic meds. She thought I should try increasing the vallium since this is not only for anxiety; but for muscle pain as well. I already take two 5mg's vallium a day. Have added an extra half; much more makes me too groggy. The bursitis sounds like a possible.

Thanks,

Gerry

Important - hypothyroidism and Nerve Support Formula
 

I,too, have hypothyroidism and I have been taking the Nerve Support Formula. I've been having symptoms of my thyroid being low and was on the verge of calling my doctor when I just happened across some important information. That Support Formula has R-Alpha Lipoic Acid in it. R-Alpha Lipoic is often used to help Peripheral Neuropathy. But - it also lessens your body's ability to convert T-4 to T-3. My doctor knows that I'm taking that formula but didn't warn me about the consequences to my thyroid levels. The information I've found says that I can continue taking the formula but my doctor needs to adjust my thyroid medication. I'll be calling my doctor this morning about this.

Plus, as you probably know, low thyroid levels can cause peripheral neuropathy. So keep a close eye on your thyroid levels.

The formula has helped me in a limited way but not a great deal. But perhaps the effect on my thyroid levels has caused that limitation. So I plan to get my medication adjusted and continue the formula for a while longer to see what happens.

I was wondering what you think of Phosphatidyl Complex. I saw it in one of those combination nerve support supplements and also a few posts on brain health. The blurb about it on the supplement page said "Phosphatidyl Complex contains lipids that comprise 76% of the myelin sheath" which I found interesting. Have you researched this supplement?

Also, I'm curious if any enzymes like bromelain have any effect. Thanks!

To the best of my knowledge, there is only a study on animals showing ALA...mixed version of lipoic acid... had an effect on T4 conversion.

R-lipoic does not appear yet in studies in humans demonstrating this effect.

People with thyroid issues, may just need adjustments periodically.
Low zinc and selenium are also factors in the enzymes that convert T4 to T3 in tissues. You can get low in zinc if you take acid blocking drugs, or ACE inhibitors for blood pressure.

Since ALA has been used for over a decade in Europe, human studies have not been done or anecdotal papers have not appeared in regards to humans having this effect with the supplement.

What lipoic acid may do however, is lower biotin utilization because it shares a cofactor transporter in the body. So chronic use of lipoic may need biotin to be added daily...preferably taken at a different time of day.

Years ago, started with Hyperthroid; doctor prescribed Tapazole. Eventuall went into remission for a couple of years. For the past 8 or 9 years have been hypothroid and take synthroid daily. But, every since I was found to have throid disease; have had bloodwork done every 4 -6 months, and a doctor visit the following week. The only time, since being hypothroid, I had reading change was when I used a generic instead of the brand synthroid. I read, on the internet, that in the case of hypothroid DO NOT use a generic. While everything shoudl be the same; it is not. I asked my doctor not to raise my prescription; but to put "Brand Only" on my prescription and started using Snythroid daily. Went back for bloodwork three months later and everything was within normal range again. Did not change doseage; only the Synthroid Brand. This had been a few years now and still within normal and no prescription change.

Just a little "did you know" using a generic could change outcome of blood test.


(Gerry)

bump for new members:

Need sub for metanx
 

My husband has PN in his toes and takes the usual 2 capsules of metanx daily. They are so expensive that we are looking for a supplement recommendation if possible. I've read other thresds/post by you and i'm just a little confused. I guess I'd just like to know "which suplements, dosage, frequency and where to purchase the purest, quality contolled supplements" All the discussion of p5p and other products made me wonder which we should get. Thank you for helping poeple with this issue

I'll give you the names of brands that are GMP and quality:

NOW (makes P5P)
http://www.iherb.com/Now-Foods-P-5-P...1&sr=null&ic=3

Solgar ( Metafolin) online mostly.
Doctor's Best:
http://www.iherb.com/Doctor-s-Best-B...3&sr=null&ic=1
this is a fairly new product and very affordable and quality.

Jarrow: (methylcobalamin).
Puritan's
Doctor's Best

Make sure you take the B12 on an empty stomach so it is absorbed properly.
And you don't need the high dose of methylfolate that is in Metanx. Start at 800mcg.

I am using the Costco generic now for my methylB12. It works out to 6 cents a day.
But I previously used Puritan's 5mg and was tested after 3months with very high levels. So I know that worked and was absorbed.
Methylcobalamin is making its way into stores locally, finally.
The other two less likely locally, and better online.
iherb.com and Amazon both have highly reduced prices.

For someone with small fibre neuropathy, caused by inflammation. No Autoimmune disease. Possible Epstein Barr Virus caused the Neuropathy in the past few years.

My condition is Ehlers Danlos Syndrome Hypermobility, it doesn't really effect me bar from the neuropathy, which is not caused directly by the genetic condition, but makes it easier for inflammation and viruses to damage them etc, which is why I believe I can heal.

Would this be helpful for regeneration of nerves.

Paleo Diet - All Organic Fruits, Vegetable and 100% Grass Fed Meats/Eggs.
Vitamin D 1000UI
General Multi Vitamin
Vitamin C 1000mg
Methylcobalamin 1000UG
Fish Oils 1.5-3.0mg EPA/D etc.
Aceyl L-Cartinine
COQ-10 100mg
Alpha Lipoic Acid 250mg
Benfotiamine

Please feel free to add suggestions and advice, I want to give my body the best chance of repairing my nerves, reducing inflammation to prevent further damage.

Vitamin d and neuropathy
 

Hi! Has there been any recent research on neuropathy and vitamin d deficiency?
I've read lots of posts from 2010.

My level is 20 and I've had burning in feet at first and then calves. Going on 5 months. I've only taken vitamin d for 3 weeks now. Didn't know if vitamin d deficiency can cause neuropathy ?

Thx kathy

Low Vit D impacts the nervous system. MS patients typically are raised to levels higher than anyone else.

I have a post on here somewhere about Vit D and diabetic PN.
Increasing Vit D also helps with chronic pain.

Vit D is not a vitamin, it is a pro-hormone and affects many things in the body. So fixing it and bringing up levels to at least 50 may help. You must use D3 and not D2...D2 ergocalciferol, does not work in humans very well.

Gerry,

This is an old post but I thought of sharing my experience on generic Synthroid. For reasons I dont understand and neither my endocrinologists (including my endoc back in my country), whenever i shift to the generic version, my thyroid function will be out of range. My doctor here in the US commented that he has some patients like me who do not respond well with the generic Synthroid.

Mary

vits/Mins
 

Magnesium Citrate is what I take, about 4 per day, for at least a year now, not seen any changes in the PN in my legs. Then again the PT popped the L 4, and left an annular tear, on top of the compression fracture that could be still causing the pain down my legs. I was warned not to take the Magnesium that was Oxide bound as it was not as effective as the Citrate/Cheleated form.

I wish some one would work out a vit/min formula for OP, the drugs do a big number on my GI system in just a few days. They know what our bones are made of, so why not a natural formula of vits and mins that can help stop OP from happening we women can start taking in our 30's. There is more to bones than Cal and D which is all the docs tell you to take. K2 is one of them.

I take Magnesium oxide, and it has really helped the buzzing feeling!
Doesn't work for pain, but it really quiets them down. I tested its efficiency twice by getting on and off it...and it's not even magnesium taurate, the more expensive version !

This is my magnesium thread:
http://neurotalk.psychcentral.com/thread1138.html

Magnesium oxide is the poorest least absorbed form you can take.
In fact so much remains in the bowel (this is because it does not ionize or dissolve in water) that it is used as a laxative today.

This post in that thread:
http://neurotalk.psychcentral.com/post20739-10.html
explains that in testing volunteers only about 4% is absorbed from magnesium oxide.

Magnesium chloride (SlowMag) or a chelate is a better choice unless you want a laxative.
In the US magnesium oxide is in Phillips tablets, a laxative.
It remains OTC for historical reasons, but newer products are far better. The amount absorbed from magnesium oxide 400mg is about 8-10mg which is the amount you get from an egg. This is calculated from the 400mg magoxide since only 200mg is actually the elemental value of the magnesium.
RDA for adults is around 350mg a day (elemental) from food.

This link helps you choose foods:
http://www.slowmag.com/

SlowMag was designed for doctors to prescribe, but it remains OTC in the US. It is available in US in generic products one of which is called Mag64.

Magnesium oxide is very inexpensive and still is in many mixtures with calcium. Don't count on its absorption therefore.
Its low price lures many people to it, but it is a very limited product. You can absorb far more magnesium by sitting in a bath tub with epsom salts. (6-8 oz in a large bathtub of LUKEWARM water.)

that is very encouraging, if a partially useless magnesium type helps me, then a good one might do magic!
thank you for the links!

thanks txgal51! Just wanted to know if you still the nerve support formula? And is it working. Are you still pretty much cured? Thanks!!

Metafolin Question
 

Background:

Prior to developing my PN, I was already taking:
B Complex
Fish Oil
Magnesium
Calcium
CoQ10

Since developing PN, I added:
Acetyl-L-Carnitine 1000 mg/day
R Lipoic Acid 200 mg/day
Thiamine 100 mg/day
Methylcobalamin 5000 Mcg/day
Biotin 5000 Mcg/day
D3 2000 IU/day
Iodine (kelp) 300 Mcg/day
(I had no improvement after taking these supplements for several weeks to several months.)

After reading about Metanx, I decided to try taking the equivalent supplements. I was already taking the methylcobalamin, so I added in Solgar Metafolin 800 Mcg/day starting last friday. I also discontinued the B Complex, since I didn't want to take the folic acid in the B Complex along with the metafolin.
I had an almost immediate positive response. Felt a little better Friday, felt significantly better over the weekend, and by Monday my pain was more like a "mild discomfort".
Unfortunately, Tuesday things started turning back the other way, and today things are back to where they were before I started.

At this point, I'm not sure if the improvement was from the Metafolin, or just a random period of temporary improvement along the roller coaster that is PN.

I have read that with certain supplements, a period of improvement followed by regression may indicate the need for a higher dosage. Not sure if that applies to Metafolin or not - so do you think it makes sense to increase the dosage beyond 800 Mcg/day? (I know the standard Metanx dosage is much higher than that, but I'm trying to be a bit conservative here.)

Also, do you think I should add in the P-5-P now, or wait until I get the Metafolin dosage figured out. I prefer to add things in 1 at a time, but is this a case where you need all 3 ingredients to work together?

Thanks for any help you can provide.

If you had a big change with methylfolate...I'd suspect you have the DNA mutation problem.

You could increase to two of them a day, and see what happens.
You already use the methylB12 so it is safe to increase the folate too.

Often when a deficiency exists and you start to repair it...there can be a "priority factor" where the body sends the newly offered item, to various spots in the body where there is need...like the brain, bone marrow, etc. So increasing a bit may give more opportunity for the folate to work.

You can add in the P5P whenever you want. I'd wait a few days to see what the extra folate does. The P5P works mostly in the methylation chemistry and formation of neurotransmitters. It is also protective of the heart. P5P is not involved with the methylation DNA transferases that I know of...but works along side with other systems.

Thanks Mrs. D for the quick response.

I'll give the extra methylfolate a shot and see what happens. I've also been considering getting the testing done for the MTHFR mutation - this might be a signal that I should go ahead and spend the hundred bucks. (Small potatoes compared to all the deductibles and copays I've paid for all the other tests and appointments over the past several months........)

Yes, I do think this is really important. When we first started here on NT... the DNA testing was not really easily available.

But I have watched over the years, and all the posts, where people gravitate here because all other venues have failed in some way.

Now after 2 years we've had some posters do the 23andme testing and all of them come back with mutations. The old % suggested by Merck when the research first came out was 10% have this. Then a doctor came on our General board and stated that he specializes in this, and went to a new seminar and they were raising the % to 30 (and perhaps even more).... so it does seem that methylation errors are becoming very significant.

The testing will also show COMT errors...which are also important.

If a person has only one chromosome affected, they limp along until they reach a state where they cannot function anymore.
The patients who have the double mutation (homozygous), are affected at earlier ages, it seems.

So yes, I think getting the testing may be helpful for you.

Methylfolate and folic acid together
 

I have read that it is bad to take methylfolate and folic acid together, especially if you have the MTHFR mutation. Something about the unmethylated folic acid blocking the pathways that the methylfolate needs to use.)

Is this true? And - if so, do you know of a basic multi-vitamin that does not contain folic acid? (I have found a few, but they are either extremely expensive, and/or are the "six capsules a day" mega supplements.)

There has been some published papers suggesting that folic acid may compete for methylfolate at the blood brain barrier.

I haven't read anything recently however.... but from what I read not too long ago, this was not 100% proven.

It is a problem because folic acid is supplemented in many US foods now. If true, then there has to be some way to minimize the folic acid contribution. So it is not just the multivitamins that would be worth looking at (in the US).

I'll look into this or you can as well... My first stop will be MTHFR.net. If anyone has an answer, he will.

Thanks for the suggestion - I checked the MTHFR website, and couldn't find a specific explanation for "why". But, the first three things in Dr. Lynch's "protocol" for treating the MTHFR mutation are:

1. Avoid fortified foods with folic acid
2. Avoid supplements with folic acid
3. Avoid folic acid blocking drugs

Seems pretty clear that he doesn't feel folic acid is a good thing if you have the MTHFR mutation.

I went through this process awhile back, and found this one. I haven't gotten it yet, as I want to spend a little more time looking into everything in it (second link).

http://www.amazon.com/gp/product/B00...A2UISRVENUHQL4

https://www.pureencapsulations.com/m...eNutrients.pdf

Interesting. As it happens, I'm considering switching from my current multi-vitamin, but I have not found a new one yet. I'll give this a look. Thanks. :)

Thanks Janieg - I'll check into this one, looks like it might be what I was looking for.

Well, I purchased the 23 and Me testing, and the kit arrived Friday. I'll see what the results are in several weeks.

BTW, I have a sister who had the 23 and Me testing done a while back, primarily for ancestry purposes. After talking about this with her, she ran her results through Genetic Genie - and she found that she is heterozygous for the MTFHR 1298 gene, and several of the COMT genes - but normal for the MTFHR 677 gene. It will be interesting to see what my results say.

I'm on 23andme. We can see if we're related. :winky:

This link is pretty good... distills down some of the lingo...

http://doccarnahan.blogspot.com/2013...-big-deal.html

Excellent link to have. thanks :)