I know that too much B-6 can cause PN symptoms. Is there any other ones that we people with PN take most often that can cause these symptoms under certain conditions as well?

Two weeks ago I spent a couple of days in Christiansburg with my daughter. We were pretty busy. I didn't take my vitamins at all. And when I got home I'm not sure why but I simply never started taking them again. All of sudden, a few days ago, I noticed that my PN symptoms were about gone. The worst I've experienced is a bit of buzzing or tingling in my feet. And I can walk a good distance and no pain. Even the pain in the joints of my big toes has gone away. I don't get it.

Could Magnesium do this? If you really didn't need it? I'm very puzzled by this. I began taking my vitamins again two days ago. I'm now taking a different form of B-12: Sublingual 'dots' rather than the oral pill form. 1000 mcgs once a day. Also, with the sublingual form, does this have to be taken on an empty stomach as it does with the pill form? Let me put these in a more friendly form for easier reading.

These are total daily amounts:
B-12 - 1000mcg
Vit-C - 1000mg
Vit-E - 400iu
Garlic Oil - 1000mg
Fish Oil - 2000mg
Vit-D - 400iu
Folic Acid - 800mcg (too much for the amount of B-12?)
Rolaids - Minimum of 2 (1080mg of calcium) Extra Strength per day.

Slow-Mag - two a day - Discontinued.
B-12 - 2500mcg - Backed down to 1000mcg.
B-Complexes - Discontinued.

I suspect one of the last three above. Instinct or maybe I remember reading something that is triggering a cautionary reaction.

Anyone have any ideas? There is also this, I've been off the Effexor for well over a month now. And the RLS type symptoms seem to be gone. I figured it was the Effexor causing this. I had the same problem with Celexa. It's always been a question in *my* mind as to whether or not I actually have PN or if it was actually induced RLS from the Effexor. The way they describe RLS symptoms it seems mine could be either one, PN *or* RLS or perhaps a bit of both?

I have Medicaid (actually Medallion, a step up from Medicaid) and I suppose I could start pushing this and begin making the rounds of the specialists. I really can't afford that even with the medical bills being paid for for the time being. It's the gas and the fact that my BF's vehicle appears to be on it's last legs transmission wise. Anywhere my doc might send me outside of our immediate area is at least an hour away and the majority are much further. I just don't know what to do. And I think part of me is scared to find it is PN, for sure. Mind over body is kind of what it is for me. If I remain convinced or at least in reasonable doubt as to what this is...well, it's a psychosomatic thing for me. I do treat my feet as if it could be PN. So I'm not in denial at least not that deeply.

Barbara

I wonder about the same things knowing what the B-6 deficency and to much of it has done to my body. Let me know if you get any answers. Getting it right isn't easy. I have to go through a lot of blood tests every month just to try to see where my levels are.

--so I'm not sure, with limited connectivity, when she would jump in, but both she and Rose have talked about people who have trouble metabolizing B6--generally due to an enzymatic deficiency--using the P-5-P form of B6, which is coenzymated and much easier to process for such people, who otherwise can have a "build-up" of non-metabolized B6 that their bodies are not processing/eliminating.

It's likely that a number of the reports of B6 toxicity in the literature--at least among people who aren't taking grams of it each day--involved people who did have such enzymatic deficiency and built up toxic levels over time.

Hi

First I need to tell you that this is not my first post as the side bar will indicate. I have been a member of braintalk for year and the Neuropathy Association before that. However my daughter deleted cookies and temp internet files and my password went with it. I tried to sing o again and it would not allow me to post. So I signed up again with a different email account and now I can post again.

I too, had some issues with this. I recently saw my neuro who looked at my list of suppliment and told me that it always worried him when someone took a b-complex and a multi. He said he wanted to check my B-6 level. Sure enough my B6 level was elevated and he asked that I not take anything that contained B6 and to check the labels of other suppliments and see if there is anymore hidden in something else. I told him I took B6 (and vit E) back in the 80"s and 90" st th suggestion of my gyno for pms symptoms and he said he has found gyns to be the biggest cause of excess b6 in his patients.

anyway, I stopped the multi and B-complex 50 and my pain levels have greatly diminished. For the record, the b6 was the P-5-P form. Barbara and anyone, I would suggest asking for a bloodtest to check your B6 levels...it made a difference to me. Now my problem is that I am tired (I think the multi wa helping with that)

Dorothy

Hi All

All I can say is I take 5000 of the methyl b-12 sub linqual (melting pill) under my tongue in the a.m. on an empty stomach. That's what I was told to do and that's what I do. I went from PINS AND NEEDLES, AND BURNING 24/7 to slightly burning once in a while if the temperature is not cooperating. Also if I sit for longer periods, my feet can burn but that is not always the case.

So in my particular situation B-12 was a godsend. Some days I even take two of them. That's 10,000 mcgs of the methyl on some days. But every single day I take at least one 5000 pill. Been the best thing I ever did.

That, and I keep my blood sugar as perfect as I can get it to be. I do not cheat, I do not eat what I'm not supposed to eat. I drink plenty of water. I eat my protein. I take in no sugar. I do not want this PN to get any worse, so I do whatever I can do to NOT MAKE THAT HAPPEN.

Now I know people who smoke and have emphasema, I know people who smoke who have cancer (I do not understand this at all). I also know a person who had a mom who had diabetes, took injections during the day, whe was told to "stop drinking all that coke". She never stopped. She drank coca cola all day long and ate twinkies, fudge pops and cupcakes (all day long). She would go to the doctor and he would try and explain to her "you cannot do this, you have diabetes)" She did not listen. She was admitted to the hospital with a foot ulcer, it became gangrene, they cut off her foot, they cut off her calf, they ultimately cut off her entire leg. Did she stop drinking the coke, and ice cream and cupcakes??? Not on your life.

She was 53 years old and she died 6 months before my friend got married.
I would like for someone to explain to me how a person can get one of their limbs cut off, then come home and start eating cupcakes again. I do not, for the life of me, understand this way of thinking. I understand that we self-medicate with various substances (I used to do this with snacking at night), but a lightbulb went off in my head, and I re-evaluated my way of eating and I, well for want of a better terminology, am in recovery, I guess you would call it.

But how come some people (even though they get a disease), just continue to smoke, drink, or eat cupcakes (and they had a leg cut off!!!).

I understand addictions, I really do. My son has one, my friends have their various addictions. But to stay in the hospital for months, having parts of your limb and then the whole limb removed, and then come home and give yourself 3 shots of insulin a day, and then buy bottles of coke, well, I don't get it. I wish someone would explain this to me.

I now am going through a sad event with a close friend who has stage 3 lung cancer. She now has a home care attendant. She is on fentanyl, vicodin, and xanax. She is anorexic. All her life by the way. The doctor told her mother. "The cancer is not what is doing your daughter in, the anorexia is"

I guess there are addictions to eating, and there are addictions to not eating.

But it costs lives. I just don't get this way of thinking.

Melody

It may be a coincidence. Or you may be one of those who (as Glenn posted) cannot metabolize the cheap, synthetic pyrodixine in most B complex and other supplements containing "B6."

I have mentioned this to Julie, but haven't seen a response.

I hope you both will consider the P-5-P form of B6. A smaller amount of this better form is safer and more effective. And if you cannot convert the pyrodoxine/pyrodoxine hcl you are getting no benefit and it can be a problem.

More information on P-5-P probably can be found on the vitamin forum by mrsd.

rose

Yes, whatever form of B12 you take, if you want to absorb every molecule possible, take it alone.

rose

There is a lot of wisdom in this post. A while back I supplemented with zinc. Then, I noticed that my multivitamin contained zinc, my calcium/magnesium supplement contained zinc, and my good diet alone probably contained all the zinc I needed. The total was well over the recommended maximum for zinc, so I stopped the separate zinc supplement and switched to a ca/mg supplement that contains vitamin D instead of zinc.

I wonder about cutting out the B-complex 50. The safe upper limit of B-6 ( from the iherb health encyclopedia is 100 mg/day ( http://healthlibrary.epnet.com/GetCo...chunkiid=21852 ) with over 200 mg/day possibly causing nerve damage. 50 mg. should be safe. Healthy nerves need a good supply of the B vitamins to function properly. Our damaged nerves need B vitamins more than healthy nerves to function and to heal. As we age, we don't absorb nutrients from our food as efficiently as youngsters. For these reasons, I strongly feel that we PNers need to supplement. A daily B-50 is a reasonable and safe amount of B vitamins for us in my opinion. Additional supplementation of B vitamins is probably not called for.* The tiny amount of B vitamins in a daily multi-vitamin isn't much of a factor and daily multi-vitamins are an insurance policy of sorts.

There is a lot of research that supports that position, research that your doctor probably isn't familiar with. Compared to the rest of the world, American medicine is very drug and surgery oriented, and far less oriented toward healing with diet, herbs, and supplements. So, it behooves us to do our own research and learn from forums such as this.

When two things happen, one after another, we naturally make a connection and perceive that the first thing caused the other. In fact, there may be a causal connection, or not. With PN especially, symptoms fluctuate a lot day to day and hour to hour. Yesterday my feet were very painful, today they are only mildly tingly. I had cereal for for breakfast yesterday and eggs today. For breakfast from now on I'm going to avoid PN-causing cereal and have PN-relieving eggs instead!


*As a complication, a very few of us cannot metabolize pyridoxine, the form of B-6 in our food and in most supplements. For those few of us, supplementation with the p-5-p form of B-6 is necessary. We had a few dramatic cures of PN in people who started supplementing with p-5-p.

I thought the whole point of the sublingual was because it was absorbed faster through the membranes under the tongue. Of course some of it is still going to the digestive track. Ok, back to morning dosing for the B-12, then.

Ah! So the B-6 form that I was taking is possibly not being broken down and used like it should be and is building up. I'll have to see if I can find a formulation of the p-5-p locally and give it a try. I *was* taking what was labeled as a Super-B complex. I can go back to the B-50 complex I was taking before that.

It almost seemed to me that the Magnesium was when the symptoms got worse, on a daily basis.

The entire time I was not taking anything, that roughly two week period, my feet seemed to get better and better as I went along. It took about 3 or 4 days at the start of when I stopped all the vitamins and supplements for the pain to reduce almost completely. I felt guilty and a bit anxious for not taking them. I've noticed things like my fingernails are so much healthier and I don't want to lose those benefits so I began taking what I listed above again.

Yep, Wing, I know what your saying about the symptoms coming and going but even on one of the worst days or worst nights for me it wasn't as bad as it was with the Magnesium or whatever it was that seemed to be triggering the symptoms to get worse rather than better. The worsening for me was a marked change as was the getting better.

Cause and effect I'm well aware of. Especially when one is looking for something, *anything* that might help symptoms get better. If something seems to help I'll try it again. If it continues to help....continue doing it. Sometimes something will work and then the next time not. That doesn't mean it won't ever work again just that there may be other factors involved that weren't there when whatever it was I did *did* work.

It's not just the tingling and burning type symptoms that abated it was the pain in the big toe joints on both feet that have gone as well. As I said, this has been a marked improvement over a fairly short span of time and it wasn't something I was expecting to see. At the time it was more that the symptoms seemed to be getting worse rather than better so why bother with all those mini-meals of vitamins when they didn't seem to be helping but rather the opposite just prior to stopping them. That's what's caused me to look at what I'm taking, again, and wonder if something I had added was causing increased symptoms. My money is actually on the Magnesium or the B-6. The B-12 I'll increase again to levels I was taking before stopping as I've seen no change in symptoms since restarting the B-12. If it was the B-12 even a dose of 1000mcg a day should affect the symptoms. It is possible for me that the B-6 was the start of the problems and the sudden symptoms of pain in the toe joints. And either continuing the B-6 was what was making everything worse or the Magnesium added to it. If I remain stable symptom-wise over the next week with what I'm currently taking I may try adding in the Mag again.

It was just such a marked change and it was consistent from day to day that I have to suspect the vitamins. There's nothing else that's changed.

Barbara

Barbara,

We're all different but I have found two definite, for sure, cause and effects for me.

1) Strong emotion (especially anger) makes my PN dramatically worse, and it continues for days after. Intense pain is a great teacher. I've learned to control my emotions and be accepting of things without reacting.

2) Micro-electric stimulation (the Rebuilder or equivalent) provides relief that lasts for days. During really bad flare-ups, twice a day for two days provides almost total pain relief that lasts for days. Usually, once a week is all I need to be pretty pain free. The down side is that the Rebuilder using the water bath method is a hassle to use, as is lugging the stuff around when we travel, especially now with paranoid security. The Rebuilder looks like a bomb detonator!