advertisement
Reply
 
Thread Tools Display Modes
Old 03-02-2012, 10:12 AM #201
Terry Mooney Terry Mooney is offline
Junior Member
 
Join Date: Nov 2011
Location: Vernon, BC
Posts: 12
10 yr Member
Terry Mooney Terry Mooney is offline
Junior Member
 
Join Date: Nov 2011
Location: Vernon, BC
Posts: 12
10 yr Member
Default

Quote:
Originally Posted by LizaJane View Post
My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.
Yes, neuropathy does improve. I discovered MaxiEnergy, a mitochondrial booster chewable cocktail tablet in the fall of 2011 after two years of a protracted diagnostic process. This product is composed of CoQ10, d-ribose, Aceytl L-Carnitine,Creatine Monohydrate,Alpha Lipoic Acid,L-Carnosine and Ascorbic Acid.
I have almost no neuropathy in my hands and encouraging progress with my feet although they are still problematical. You can learn about MaxiEnergy at
Oramune.com. My posts describing my particular journey through peripheral neuropathy are in this thread. I remain hopeful that I will be free from this curse in a short time.
Terry Mooney is offline   Reply With QuoteReply With Quote

advertisement
Old 03-04-2012, 03:06 PM #202
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

Quote:
Originally Posted by mrsD View Post
Idiopathic has very few windows of opportunity, with all that fiber and calcium.

There is very little in the Lipoic to affect B12. B12 is absorbed by food and fiber, reducing availability to the passive action at the villi of the intestine. It is a mechanical thing like a sponge.
This is assuming that the intrinsic factor is not working.

The other option is to only take fiber once a day.
Mrs.D., my TSH abnormal since October 2011 even with the adjustment of Synthroid dosage every 5 weeks. I wanted to try the R-Lipoic Acid but when I asked my n eurologist, she said to wait until my TSH becomes normal. Though, she added that there has has been no concrete studies on the side effects of R-Lipoic on hypothyroidism, its better to be on the safe side.

On VitB12, my result last May 2011 was 908 pg/ml (211-946), but you mentioned that there is no known toxicity on VB12 so I am taking now 5000mcg. Did you say that if my symptoms do not improve within 3 months, this means that it will not do much. One thing I notice when I started taking the Methycobalamin is that I dont get so tired as I used to. Though I still feel tired but I know that this tiredness is caused by the pain.
Idiopathic PN is offline   Reply With QuoteReply With Quote
Old 03-04-2012, 03:33 PM #203
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Idiopathic PN Idiopathic PN is offline
Member
 
Join Date: Jan 2012
Location: Jacksonville, FL
Posts: 793
10 yr Member
Default

Quote:
Originally Posted by Terry Mooney View Post
Yes, neuropathy does improve. I discovered MaxiEnergy, a mitochondrial booster chewable cocktail tablet in the fall of 2011 after two years of a protracted diagnostic process. This product is composed of CoQ10, d-ribose, Aceytl L-Carnitine,Creatine Monohydrate,Alpha Lipoic Acid,L-Carnosine and Ascorbic Acid.
I have almost no neuropathy in my hands and encouraging progress with my feet although they are still problematical. You can learn about MaxiEnergy at
Oramune.com. My posts describing my particular journey through peripheral neuropathy are in this thread. I remain hopeful that I will be free from this curse in a short time.
Hi Terry,
I am glad that your symptoms are getting better. I see that you have been a member since November 2011, does that mean that you have been diagnosed of PN around that time or earlier?

May I ask, what is the cause of your PN? I am sorry, you may have posted about your condition in the past but I did not read it.

Thanks.
Idiopathic PN is offline   Reply With QuoteReply With Quote
Old 03-14-2012, 08:42 AM #204
Dr. Smith's Avatar
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
Dr. Smith's Avatar
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
Default Re: Doc,

Quote:
Originally Posted by ger715 View Post
You mentioned finding supplements that have improved your symptoms for your PN. Would you mind sharing what they are.
Hi Ger,

Sorry I missed this. I'm taking pretty much what most folks here are taking, including yourself. I had a near-miraculous response to R-Lipoic - 48 hrs and no more burning/pins & needles. I take methyl B12. Tried Acetyl L Carnitine, but couldn't discern any difference after several months, so I stopped it ($). I take B5 (pantothenic acid) for a couple reasons, PN being one, and it helps the RLA (even though my PN is not diabetic). It stopped the residual shocks/needle jabs.
http://www.diabeteslibrary.org/View....ntothenic_acid

Started the stabilized RLA this month - no difference yet - may be too early to tell. NAC - been taking it for years - first because I used to take a lot of acetaminophen (NAC protects the liver), but still do because it's a very powerful anti-oxidant (like RLA). B-complex, Ester-C (can't tolerate ascorbic), D3 (1000IU/day), E (Tocomin - no idea why I take this except a doctor said I should several years ago due to my age & being male.)

That's pretty much it for PN. Benfotiamine is on my list.

Overall, I'd say I stopped my PN's progression when I began the B12 & RLA (or it may have been coincidental - that happens with some middle-age PN). Since then things have gotten a little better, but almost imperceptibly (which is another place the journal has helped). I also finished off an old scrip I had for amitriptyline, and I think that actually helped a lot (neurogenesis?), but I don't really have any valid medical reason to ask for any more.

I stopped glucosamine/chondroitin/msm after taking it for years after seeing this:
http://www.quackwatch.org/01Quackery...ucosamine.html
Can't say it was doing anything anyway - some people (wife included) swear by it - can't hurt.

I take some hormone supplements for adrenal fatigue/suppression from chronic pain, but that's whole 'nother ball-o-worms...
http://neurotalk.psychcentral.com/thread156416.html
They are working GREAT!

N.B. I tried a little hot sauce & bleu cheese dressing on my chicken last night, and my feet burned for several hours afterward. Forgot I had an inflammation response to nightshades. Better this morning.

Doc
__________________
Dr. Zachary Smith
Oh, the pain... THE PAIN...

Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE.
All opinions expressed are my own. For medical advice/opinion, consult your doctor.
Dr. Smith is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (03-14-2012)
Old 03-14-2012, 10:38 AM #205
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
ger715 ger715 is offline
Magnate
 
Join Date: Jul 2011
Location: Illinois
Posts: 2,180
10 yr Member
Default

Doc......As I previously mentioned, I am taking 100mg' of the Best Stabilized R-Lipoic Acid. Are you taking more than 100 mg's? After starting the R-lipoic, I began losing weight. I have lost about 10 -12 lbs. over a 8 mo. period. (Have not change my eating habits.) They do seem to make me a little hyper. Could be coincidence.

I read the info on the Pantothenic Acid (B5). Is this the brand you are using? Also, what is the dose you are taking?
Again, thanks so much for your input.
(Ger)

Last edited by ger715; 03-14-2012 at 10:55 AM.
ger715 is offline   Reply With QuoteReply With Quote
Old 03-14-2012, 10:58 AM #206
Nervous Nervous is offline
Member
 
Join Date: Jul 2010
Posts: 309
10 yr Member
Nervous Nervous is offline
Member
 
Join Date: Jul 2010
Posts: 309
10 yr Member
Default

NAC = ?


Thanks.
Nervous is offline   Reply With QuoteReply With Quote
Old 03-14-2012, 11:18 AM #207
Dr. Smith's Avatar
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
Dr. Smith's Avatar
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
Default

Quote:
Originally Posted by Nervous View Post
NAC = ?
N-Acetyl Cysteine

http://en.wikipedia.org/wiki/Acetylcysteine

http://www.webmd.com/vitamins-supple...TYL%20CYSTEINE

http://www.raysahelian.com/acetylcysteine.html

Doc
__________________
Dr. Zachary Smith
Oh, the pain... THE PAIN...

Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE.
All opinions expressed are my own. For medical advice/opinion, consult your doctor.
Dr. Smith is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Nervous (03-14-2012)
Old 03-14-2012, 11:36 AM #208
Dr. Smith's Avatar
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
Dr. Smith Dr. Smith is offline
Senior Member (**Dr Smith is named after a character from Lost in Space, not a medical doctor)
Dr. Smith's Avatar
 
Join Date: Oct 2010
Location: Lost in Space
Posts: 3,515
10 yr Member
Default

Quote:
Originally Posted by ger715 View Post
Doc......As I previously mentioned, I am taking 100mg' of the Best Stabilized R-Lipoic Acid. Are you taking more than 100 mg's? After starting the R-lipoic, I began losing weight. I have lost about 10 -12 lbs. over a 8 mo. period. (Have not change my eating habits.) They do seem to make me a little hyper. Could be coincidence.
I've heard of some people (mrsD, IIRC) getting a bit agitated when taking more than 100mg/day; I have not experienced that myself. I wish it would help me lose weight!

I started on 100 mg/day of regular RLA. I tried 200 mg, but didn't notice any better effect, so I dropped back down to 100 mg. I bought a lot of the stuff on sale (cheap) and was trying to use it up before starting the stabilized type. Then I thought to take the stabilized in the morning, and the regular in the evenings (killing 2 birds, so to speak, but using the less powerful type in the evening in case it did cause agitation). That's where I am now (using up the last bottle of regular). I still have not noticed any agitation (or difference for that matter).

Quote:
I read the info on the Pantothenic Acid (B5). Is this the brand you are using? Also, what is the dose you are taking?
What brand? I'm taking Puritan right now, only because it was the best deal at the time we ordered. I'm taking 500 mg twice a day, which is probably higher than necessary for most folks, but it's doing triple duty for me, and one of those requires a higher dose. My plan is to decrease the dosage once I have met certain goals.

Doc
__________________
Dr. Zachary Smith
Oh, the pain... THE PAIN...

Dr. Smith is NOT a medical doctor. He was a character from LOST IN SPACE.
All opinions expressed are my own. For medical advice/opinion, consult your doctor.
Dr. Smith is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
ger715 (03-14-2012)
Old 04-15-2012, 11:08 AM #209
Senjuro2 Senjuro2 is offline
Junior Member
 
Join Date: Apr 2012
Location: Orlando
Posts: 6
10 yr Member
Senjuro2 Senjuro2 is offline
Junior Member
 
Join Date: Apr 2012
Location: Orlando
Posts: 6
10 yr Member
Default Cidp

Quote:
Originally Posted by LizaJane View Post
My neuropathy began in 1996. By 1999 I had two abnormal EMGs. I think had a bunch of other abnormals. I went to Mayo and had more abnormals.

Today I had an EMG as preparation for spinal surgery and the sensory nerves were normal. I haven't gotten the final report, but he neurologist who did the test said all nerves were normal, except my peroneal, which have never been normal. I do have a new L5 radiculopathy with denervation of the L5 muscles on the left, but it's not new enough to be causing my pain. (that's from the spine)

After seeing the results, one of the neuros said: That means the original diagnosis was wrong, and you never had neuropathy!

Yah, right. I told them I had learned how to care for it--the secret is feeding the mitochondria needed to grow axons (CoQ10, acetyl L carnitine) and taking antioxidants to keep inflammation from causing harm. In addition, keep using the muscles, whether you feel them or not. That was the secret I learned on this forum.

And really, my symptoms are so small compared to 10 years ago. Yes, they're not gone, but they are not that significant.

It can be done. If you've got an idiopathic small fiber neuropathy, or long fiber, and don't have an ongoing CIDP or Sjogren's picture, your peripheral nerves can heal.
Is there a thread on this site for CIDP specifically? My Peripheral Neurologist told me that I do infact have Chronic Inflammatory Demylenating (sp?) Polyneuropathy. I did however have yet another Peripheral Neurologist tell me otherwise. I, however do believe that it is CIDP because it's getting worse as the years pass by. I've never heard of Sjogren's Picture before, though, I'll need to look that up.
Senjuro2 is offline   Reply With QuoteReply With Quote
Old 04-15-2012, 11:43 AM #210
mrsD's Avatar
mrsD mrsD is offline
Wisest Elder Ever
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
mrsD mrsD is offline
Wisest Elder Ever
mrsD's Avatar
 
Join Date: Aug 2006
Location: Great Lakes
Posts: 33,508
15 yr Member
Lightbulb

Welcome to NeuroTalk:

No not yet, but we have as of now, 252 threads scattered on this forum about it.

If you click on the main page... Peripheral Neuropathy at the top of any page on this forum, and go to the upper right where "search" is, type in CIDP into the search box. The search box only appears on the first page here.

All the threads will be listed. I cannot link to a search, because it is time driven and the link expires. So you will have to do it.

We've been here almost 6 yrs now and there are many things you can find with the search function.

Many of the CIDP patients eventually get put on IVIG to see if it can halt progression. Many CIDP's are autoimmune as well, so treating the autoimmune can arrest progression.

http://emedicine.medscape.com/article/1172965-overview

CIDP is a more progressing and serious type of PN, because it can attack motor neurons as well as sensory. It is taken more seriously by doctors for this reason. Purely slow progressing sensory only PN is not treated in the same way. Sensory only is more common.

edit to add.... I just saw your other post at our Introductions forum.
If you were unconscious for a month? YOu could also have some brain damage, like stroke patients get. Central brain damage can also cause chronic pain. This is called central pain syndrome.
http://en.wikipedia.org/wiki/Central_pain_syndrome
If you have THIS I don't think IVIG would work as well.
__________________
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 QuoteReply With Quote
Reply


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
paraneoplastic/SF-non lenght dependent neuropathy/demyelinating neuropathy pelztier86 Peripheral Neuropathy 16 05-21-2013 12:16 PM
Small Fiber Neuropathy (or Length-Dependent Neuropathy) plgerrard PN Tips, Resources, Supplements & Other Treatments 1 05-09-2010 06:56 AM


All times are GMT -5. The time now is 09:27 AM.

Powered by vBulletin • Copyright ©2000 - 2024, Jelsoft Enterprises Ltd.

vBulletin Optimisation provided by vB Optimise v2.7.1 (Lite) - vBulletin Mods & Addons Copyright © 2024 DragonByte Technologies Ltd.
 

NeuroTalk Forums

Helping support those with neurological and related conditions.

 

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.