Go Back   NeuroTalk Support Groups > > >

~~SUPPLEMENTS~~~ for Peripheral Neuropathy:

Reply
 
Thread Tools Display Modes
Old 10-17-2010, 08:45 AM   #31
Trishgels
New Member
 
Join Date: Oct 2010
Posts: 2
Default B12 Injections

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
Trishgels is offline   Reply With Quote
Old 10-17-2010, 09:11 AM   #32
mrsD
Wisest Elder Ever
 
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,515
Lightbulb Welcome to NeuroTalk:

With a very low level of B12 for a long time period... it may take a while to recover. If there has been permanent damage to the spinal cord from the low levels, there may not be 100% resolution.

This post link has a copy of the paper by Dr. Snow, which is from 1999. His take which I bolded there is that patients with neurological problems may have to be kept at higher than typical range for treatment, than most others:

http://neurotalk.psychcentral.com/post698522-70.html

The cut off in US now appears to be 400. But following Dr. Snow's advice, would mean you should strive for higher. I'd say at least 1000. You can reach that goal by taking oral properly.
5mg of methylcobalamin (which is the active form) daily on an empty stomach has worked for many on this forum.

Many doctors don't know about active form, being available and so hence they still use the synthetic which some people cannot activate in the body. That link above I gave, is from the B12 thread, which has medical links and explanations about the various treatments and reasons for them.

So please read it carefully, the whole thread, and perhaps then your path may be clearer.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With Quote
Old 10-17-2010, 11:44 AM   #33
Kitt
Grand Magnate
 
Join Date: Aug 2006
Posts: 3,989
Default ???

Quote:
Originally Posted by Trishgels View Post
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.
Kitt is offline   Reply With Quote
Old 10-18-2010, 09:25 AM   #34
JoanB
Member
 
JoanB's Avatar
 
Join Date: Sep 2009
Location: Pittsburgh
Posts: 738
Default Question or Suggestion...

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!
__________________
PPMS Rx 2013, symptoms since 2000
JoanB is offline   Reply With Quote
Old 10-18-2010, 10:04 AM   #35
mrsD
Wisest Elder Ever
 
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,515
Lightbulb

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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With Quote
Old 10-18-2010, 11:44 AM   #36
JoanB
Member
 
JoanB's Avatar
 
Join Date: Sep 2009
Location: Pittsburgh
Posts: 738
Default

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.
__________________
PPMS Rx 2013, symptoms since 2000
JoanB is offline   Reply With Quote
Old 10-18-2010, 01:58 PM   #37
mrsD
Wisest Elder Ever
 
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,515
Lightbulb

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.)
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With Quote
Old 10-19-2010, 08:52 AM   #38
JoanB
Member
 
JoanB's Avatar
 
Join Date: Sep 2009
Location: Pittsburgh
Posts: 738
Default

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.
__________________
PPMS Rx 2013, symptoms since 2000
JoanB is offline   Reply With Quote
Old 10-19-2010, 02:43 PM   #39
Rick Stull
New Member
 
Join Date: Oct 2010
Location: Owasso, OK
Posts: 3
Default

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
Rick Stull is offline   Reply With Quote
Old 10-26-2010, 09:58 AM   #40
mrsD
Wisest Elder Ever
 
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,515
Lightbulb Ribose

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.
__________________
All truths are easy to understand once they are discovered; the point is to discover them.-- Galileo Galilei

************************************

.
Weezie looking at petunias 8.25.2017


****************************
These forums are for mutual support and information sharing only. The forums are not a substitute for medical advice, diagnosis or treatment provided by a qualified health care provider. Always consult your doctor before trying anything you read here.
mrsD is offline   Reply With Quote
Reply

Thread Tools
Display Modes

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

BB code is On
Smilies are On
[IMG] code is On
HTML code is Off


Similar Threads
Thread Thread Starter Forum Replies Last Post
Peripheral neuropathy chinderm New Member Introductions 6 03-13-2017 03:55 PM
Peripheral neuropathy jgbtrans New Member Introductions 3 01-04-2011 03:30 PM
peripheral neuropathy mommab New Member Introductions 5 09-05-2010 03:17 PM
peripheral neuropathy madovi02 New Member Introductions 7 12-22-2008 07:51 PM
MG and Peripheral Neuropathy susanjpullen Myasthenia Gravis 2 11-24-2008 03:22 PM


All times are GMT -5. The time now is 11:51 PM.
Brought to you by the fine folks who publish mental health and psychology information at Psych Central Mental Health Forums

The material on this site is for informational purposes only, and is not a substitute for medical advice, diagnosis or treatment
provided by a qualified health care provider. Always consult your doctor before trying anything you read here.


Powered by vBulletin • Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Search Engine Optimisation provided by DragonByte SEO v2.0.31 (Lite) - vBulletin Mods & Addons Copyright © 2018 DragonByte Technologies Ltd.

All posts copyright their original authors Community Guidelines Terms of Use Privacy Policy