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Old 05-08-2009, 04:58 PM #1
atltom atltom is offline
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Confused Making sense of my supplements

I am 62 yrs old and was diagnosed with idiopathic sensory PN 12 years ago. Like most others, it took many doctor visits to get a correct diagnosis. Mine actually started after I ruptured 2 discs in my low back and 2 in the neck. I now get regular epidurals for the low back (which is now diagnosed as degenerative disc disease) and RF ablations for the cervical problems. So far, my PN has been isolated mostly to my feet, with the left being the worst where it has progressed up to above my calf. I get occasional numbness/pulsating in the fingertips of my left hand.

I currently take 1800-2400mg of Neurontin daily and ultram as needed. I have been following this routiine for most of the 12 years. I recently tried Lyrica but after the weight gain, ankle swelling and increased activity in my left hand fingers, I switched back to the Neurontin.

Before I made the switch to Lyrica, the burning in my feet really flared up and just wouldn't let up (which it usually would do after a few days or so).
That's when I decided that perhaps I should revisit the supplements that I take.

Currently, I take the following each day:

300 mg of Appha-Lipoic Acid
1400 mcg of Folic Acid
25 mg of coenzymated B6
25 mg B6 as pyridoxine hydrochloride (in a multi vitamin)
2 mg methylcobalamin
100 mcg B12 as cyanocobalamin (in a multi vitamin)

My recent B12 blood test resulted in 2000 pg/ML. I assume that this high number is good, but should I also check the folic acid level? Am I taking too much or too little of anything? Any advice would be much appreciated. Thanks.
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Old 05-08-2009, 06:13 PM #2
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Question

Hi atltom,

So how long have you been on the supplements? Notice any changes?

Do you use any other drugs? Like for blood pressure, heart, or other long term condition?

What is the name of the multivit you use? 25mg of pyridoxine is unusual in a multi. Is it a B-complex?

Compression damage may be healed when the compression is released. The only thing missing from your list is fish oil, which helps with remyelination of damaged neurons.
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Old 05-09-2009, 07:38 AM #3
glenntaj glenntaj is offline
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Default And I'm wondering--

--if you have documented ruptured discs, and neuropathic symptoms that can be traced to compression of nerve roots along the dermatomes involved (a type of neuropathy called radiculopathy--"radic" is Latin for "root") are you actually idiopathic?
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Old 05-09-2009, 09:51 AM #4
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Confused

Quote:
Originally Posted by mrsD View Post
Hi atltom,

So how long have you been on the supplements? Notice any changes?

Do you use any other drugs? Like for blood pressure, heart, or other long term condition?

What is the name of the multivit you use? 25mg of pyridoxine is unusual in a multi. Is it a B-complex?

Compression damage may be healed when the compression is released. The only thing missing from your list is fish oil, which helps with remyelination of damaged neurons.
MrsD,

I have been taking this same qty of supplements for at least 8 yrs. The multi-vit is "Hi Energy Multi for Men" a daily complex by futurebiotics from Iherb. Just realized that I only take 2 of these each day which reduces the pyridoxine to 16mg, the folic acid to 330 mcg and the cyanocobalamin to 66. All of my supplements are from iherb with brand names of doctor's best, source naturals and natural factors. And like I said, this was keeping everything as well as can be expected until the latest flare-up. If I recall correctly, when my B12 was checked years ago, it was around 400.

I also use 200mg of celebrex daily for arthritic knees which will need to be replaced within the next few years. Also take 50 mg of zoloft, 40mg of protonix and 1500mg Glucosamine/200 mg Chondroitin. Also use Astelin and Flonase for sinus condition.

I also get excruciating trigger points in my neck/back which have to be injected at least every 6 weeks. Been told the Fibromyalgea (sp?) is the culprit?

I have always complained to my pain doctor that almost every time my low back gets bad, my feet and the PN gets worse. I have had 3 MRI'S of the low back over the years but none of them indicate any compression, at least that is what I have been told. I had a discogram done 6 years ago that indicated the discs at L3/L4 and L5/S1 were responsible for my back pain. The latest MRI done in 2006 indicates rudimentary disc at L5/S1 and degenerative disc disease at L4/L5 with disc space narrowing and disc herniation posteriorly on the left entering the left neural foramen with mass effect on the exiting nerve root. Mild to moderate foraminal narrowing is present on the right. There is mild to moderate central stenosis also. Does the above sentence that says "mass effect on the exiting nerve root" indicate some compression??

One other thing which may be very important is that I hurt my back about 35 years ago but with exercise it never bothered me until the latest incident 12 years ago. However, since the initial injury, I have always had to sit on special cushions with a section cut out so that nothing touched the tailbone area. It has always given me troulble but no one could ever explain why.

Sorry to go on and on but I just wanted you to have all of the history. Thanks.
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Old 05-09-2009, 09:58 AM #5
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Confused

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Originally Posted by glenntaj View Post
--if you have documented ruptured discs, and neuropathic symptoms that can be traced to compression of nerve roots along the dermatomes involved (a type of neuropathy called radiculopathy--"radic" is Latin for "root") are you actually idiopathic?
glentaj,

I just sent MrsD an excerpt from my 2006 MRI. Since I truly do not understand all of the terminology I can only go by what my doctors have told me. However, the one statement about "THERE IS DISC HERNIATION POSTERIORLY ON THE LEFT ENTERING THE LEFT NEURAL FORAMEN WITH MASS-EFFECT ON THE EXITING NERVE ROOT" bothers me. Can you provide any further explanation? Thanks.
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Old 05-09-2009, 10:55 AM #6
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Lightbulb

When the discs rupture, the contents leak out and can squeeze the nerves exiting the spine.

Some doctors now can repair this easily (in the past not so).

Compressed nerves then hurt..send pain signals.

You should discuss with your doctor what would be best for you.

And you can also try some Lidoderm patches on the back to help with pain.

You see, if you have compression issues, taking other supps may not really help you much. Many of the other supplements are for improving the cells' functions when damaged by toxins or drugs. Compression is totally different. The axons are damaged, so using your list with added EFAs (essential fatty acids) may help repair them. Also nerves can get into the firing mode and not quit...that is what the Lidoderms are good for.

Do you have any cartilage left in your knees? If so, then SAMe may help. In fact it would be far better than the glucosamine mix you take. Long term use of NSAIDs like Celebrex over 6 wks actually prevent healing in joints. This is because some Cox-2 cytokines actually are healers. (some are inflammatory, some healing). So while in the short run NSAIDs feel good, in the long run I believe they do more harm than good.

I used SAMe for about 10 yrs and rebuilt my right knee. I avoided a replacement using it, and my left never followed suit as predicted by the Ortho doctor.

There is even a study showing Lidoderm equiv. to Celebrex in pain relief in the knee. If you want that I can search for it and put it up here.

So at this point, I'd just keep what you are doing, and add fish oil, daily. Start at 3 regular strength, or 1 or 2 double strength and see how you feel in about 2 months. Fish oil also helps with inflammatory pain, and improves the cardiovascular system.

Another great anti-inflammatory is Curcumin. I use Curcugel-500 which has a improved absorption rate promised.
But Doctor's Best makes a nice one too, since you like that one.
Curcugel-500:
http://www.epic4health.com/cuul500mgena.html
Curcumin has some nice studies out now about it...reducing inflammation in the body and in arteries. So it is very helpful for preventing heart disease as well. It might help your back some too.
The Doctor's best version has Bioperine in it...which is an enhancing pepper extract. It is nice because Bioperine is showing some lipid lowering potential in a new 2009 study.
I've been using the Curcugel since Jan and it has allowed me to back off the SAMe a bit. (can't give it up totally tho).
I use NatureMade SAMe BTW.

NSAIDs do deplete folic acid...so you can continue a good dose of that in your list.

So this is what you can try for now. All these suggestions are to help with arthritis and the back pain.

SAMe can be started at 200mg a day in the morning on an empty stomach. I needed 600mg daily for a long time to keep my knee quiet.
But now I am doing 400mg every other day and the curcugel daily.
Some experimenting is necessary to give a more personal result IMO.
You can get SAMe at Costco affordably, or at the RiteAid/Walgreen's Buy one get one Free. If you get generic make sure it is blister packaged since inferior SAMe comes in bottles with loose tablets.
Don't take SAMe after noon, as it may keep you from falling asleep!
(the added energy in the morning is usually welcome in chronic pain patients!)
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Old 05-09-2009, 12:39 PM #7
atltom atltom is offline
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Confused

Thanks for all of the great suggestions, MrsD. I will try the fish oil since I have some that I never really started. Since I have a tiny bit of cartilege left in my knees, I will also try the SAMe. I would love getting off the Celebrex, if for nothing else, the cost alone. I will also check out the Curcumin. I have some Lidoderm patches. Is it best to apply them where the pain is or half them and apply to each side of the tailbone area?

The film produced from the discogram I had actually showed the fluid seeping out to the one side. I still keep thinking that somehow the nerves are being compressed based on how my PN reacts. What is the procedure called where they can now repair this? And I guess a neurosurgeon would be the type of doctor to perform it?
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Old 05-09-2009, 03:46 PM #8
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Lightbulb

Okay, placement for Lidoderms is really critical for success.

For your back it is pretty obivious. I'd put a whole patch across your lower back just before the crack of the buttocks. Clean dry skin. They tend to move around. If you perspire alot, it may need tape around the sides. If after 3 days you get no relief, raise them up about 2 inches.
You have to find the "right"spot.

For the knee, I use 1/2 patch behind the knee, on the thigh side, on the back of the thighs, going across just above the bend. There are nerves in there that the Lidoderm numbs up. If you have pain in the front of the knee, don't put it there.
For the front of the knee you can use Salonpas patches. These work very well for me. I often get pain on the inside of the leg just below the knee. I stack 2 of them there. After gardening I sometimes need them.
These are great for those other spots:
http://www.salonpas.us/salonpas.php
Use only the ones that have methyl salicylate in them. (unless you are allergic to aspirin?) They make several kinds. So read the labels carefully. They are really good for tendonitis too.
I buy mine in bulk at Costco. But RiteAid and Walgreen's have the smaller boxes -- 40 for about $4.00. Once opened, put the remaining in a Ziploc to keep fresh. You can cut them too.
They will work on the back, but are less effective where there is alot of flesh between the patch and the pain site. So feet, knees, fingers, work better. I have used them on the back however for emergencies. They do have a scent of wintergreen, but one gets used to that...it is a small trade off for relief!

I use them just about every day either for my feet, knees or hands. Something will always be bothering me. ( I have severe osteoarthritis).

I think the interventions you should be looking at are the ones for inflammation.

Lidoderms need everyday use for at least a week. Here and there is less effective. I had a total remission of severe meralgia paresthetica in 2 weeks with them. That was unexpected, and taught me alot. Using them irregularly doesn't turn off the nerves the same way.
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Old 05-11-2009, 12:21 PM #9
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Confused

MrsD,

Thanks again for the advice, I'll definitely try the Lidoderm patches on my low back. Have you ever used them on the bottom of your feet for the PN burning?
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Old 05-11-2009, 01:59 PM #10
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Lightbulb

I don't think the Lidoderms work well on the bottoms of the feet.
For one thing, the skin is REALLY thick on the bottoms of the feet and substances don't get thru the thick skin well.
Dead skin cells are not very water permeable.

You can try them there and see for yourself.

Here is a thread about placement suggestions for the feet:
http://neurotalk.psychcentral.com/sh...light=Lidoderm
There is a link in one of my posts there showing anatomy and
why putting the patches is better over larger nerves that are
near the thinner skin on the top of the foot, or ankle.
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