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.

Rick Stull · 10-19-2010, 02:43 PM

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

mrsD · 10-26-2010, 09:58 AM

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.

kwinkler · 01-08-2011, 07:47 PM

I have experienced symptoms of peripheral neuropathy for the past two and a half years. A biopsy recently showed that it is a non-length dependent peripheral neuropathy. I have not had any other positive tests, except a mildly high B6 level (low to mid 40s), which was well after a year of symptoms and probably related to a B-complex vitamin I was taking back then. It was slowly coming down on the last set of blood work. I am currently taking:

B12 (methylcobalamine): 5000 mcg
folate (methylfolate): 1000 mcg
D3: 2000 IU
CoQ10: 100 mg
curcumin: 500 mg
biotin: 1 mg
acetyl-l-carnitine: 750 mg
Mg (chelate): 66% RDA
B1 (benfotiamine): 300 mg
vit C (Ester C): 500 mg
r-lipoic acid: 100 mg
omega 3: EPA 650 mg and DHA 500 mg

astaxanthin: 4 mg
vit E: 400 IU
B2 (riboflavin): ?
B3 (niacin): ?

I have dosing questions on the last 4. I am not currently taking the B2 and B3, but am curious. The first group I gathered dosing information from here. Thanks. My main question is a dosing schedule. Other than B12 on an empty stomach and to stay NPO for about an hour after, I have been unable to find any additional information. Are some better to take in the AM or PM? Are there ones that I should take together? Are there ones that I need to separate? Is there anything I am not taking that you would recommend?

Sorry about the long post and I look forward to any input.

Thanks

Nervous · 01-08-2011, 08:14 PM

What is "NPO"?

Nervous · 03-20-2011, 06:50 PM

For several months, I have been taking 1 gram per day of d-ribose in the hope of improving my energy level and resolving some of my fatigue. Disappointingly, I had mild to no result at 1 gram per day.

Recently, mrsD posted a link to a fibromyalgia site that recommended 15 g per day of d-ribose ( http://www.fibroandfatigue.com/the-a...-d-ribose.html ). I was prepared to take 15g, but I found noticeable improvement, for the moment, with 10 g. This is a small miracle for me, since fatigue has prevented me from doing much of anything at all. The effect of the larger dose was immediate and I now have the energy to get through the day, go to work and exercise. Let's hope things continue along this line.

N.B. I found a note on webmd.com that recommended d-ribose doses as high as 60 g per day.

mrsD · 03-21-2011, 07:58 AM

I posted here that I started at 2.5grams a day and worked up to 10, which I didn't like, and then dropped down to 7.5grams which is where I stayed.

I don't feel comfortable in those high ranges--- the people who use it that way, commonly, are body builders who are putting on alot of muscle weight would would mean more muscle metabolism stress.

The link in my ribose thread contains a study, about whether ribose can cause elevated blood sugars. Since many here are possibly insulin resistant at least or prediabetic or impaired glucose tolerance and maybe some diabetic I don't feel comfortable giving advice in really high ranges without the research behind it to explain effects on blood glucose.

One gram a day, is not very much for this supplement. But over time it might still lead to some small improvements. Ribose is not common in our food chain.

When one purchases the d-ribose powder, (not capsules), it typically comes with a scoop. 10 grams/ teaspoonful. This supplement is meant to be taken by the gram.

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