SUPPLEMENTS~ for Peripheral Neuropathy:

Kitt · 10-17-2010, 11:44 AM

Quote:

Originally Posted by Trishgels

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

Has any doctor/neurologist ever mentioned that it "might" be a hereditary disease? Thank you.

JoanB · 10-18-2010, 09:25 AM

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!

mrsD · 10-18-2010, 10:04 AM

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.

JoanB · 10-18-2010, 11:44 AM

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.

mrsD · 10-18-2010, 01:58 PM

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.)

JoanB · 10-19-2010, 08:52 AM

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.

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