advertisement
Reply
 
Thread Tools Display Modes
Old 07-12-2015, 06:03 PM #11
beatle's Avatar
beatle beatle is offline
Member
 
Join Date: Nov 2013
Posts: 424
10 yr Member
beatle beatle is offline
Member
beatle's Avatar
 
Join Date: Nov 2013
Posts: 424
10 yr Member
Default

Quote:
Originally Posted by Eskiemom View Post
I have not had any improvement like some have.
I've tried everything with no affect.
I've tried every supplement too. I've even gone off of them and didn't notice any difference but I take them anyway just in case. Or perhaps it's just so I can feel like I am doing something to help this horrid condition.

I was reading about neuropathy on a site where doctors weigh in and it was very discouraging. One says some laser treatment shows positive results, another says there are no studies to support it. One says narcotics are the most effective, another says they would never prescribe them. They contradict one another because there is no acceptable treatment protocol.

Symptom management and vitamin supplements are not enough. Diet and exercise are not enough. All of it combined is not enough.
beatle is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
bluesfan (07-15-2015), EnglishDave (07-13-2015), KnowNothingJon (07-12-2015), zkrp01 (07-15-2015)

advertisement
Old 07-12-2015, 06:21 PM #12
Eskiemom Eskiemom is offline
Junior Member
 
Join Date: Jul 2015
Posts: 29
8 yr Member
Eskiemom Eskiemom is offline
Junior Member
 
Join Date: Jul 2015
Posts: 29
8 yr Member
Default

No statin drugs - ever.
Coq10 is from Andrew Lessman
I took the R-lipoic in the past. Several bottles of the same brand you recommend. I've ordered it again.
Eskiemom is offline   Reply With QuoteReply With Quote
Old 07-15-2015, 07:01 PM #13
zkrp01 zkrp01 is offline
Member
 
Join Date: Mar 2014
Posts: 550
10 yr Member
zkrp01 zkrp01 is offline
Member
 
Join Date: Mar 2014
Posts: 550
10 yr Member
Wink Politics, Religion & Supplements

Quote:
Originally Posted by Eskiemom View Post
No statin drugs - ever.
Coq10 is from Andrew Lessman
I took the R-lipoic in the past. Several bottles of the same brand you recommend. I've ordered it again.
To each his own-- somebody famous said that. When I first started out, I wanted to get better and I mean yesterday!!! After a couple of years I have learned a lot from Mrs.D and I-we all owe her so much. If you have baseline numbers such as B-12, you know if you need to supplement or not. If you don't know if you need it or not, its akin to buying insurance. And everyone knows how rich Warren Buffet is. I will always have to supplement B-12 as I was deficient due to years of Metformin and I will continue both. My Endo put me on the CoQ-10, nuff said. He said also that I needed the Gelcap of Vitamin D. I have discontinued 5 or 6 others for a time and do not feel any different. But what if I am messing up???? You see my point? I will always read everything from Mrs.D but I might not take everything I used to in the beginning. I also had a Neuro tell me to stop taking Zinc as a supplement(I had read something on You-Tube)there is a zinc-copper ratio that has to be tested for. My B-12 went from 119 to over 900 and only then did I stop monthly injections and maintain with Foltanx. That was the only difinitive numbers that I knew of. All the rest were"insurance". As a child you didn't know if you are a conservative or a liberal-a Baptist or a Methodist. If you are just getting started with supplements you just don't know which ones are going to be, " your own".
zkrp01 is offline   Reply With QuoteReply With Quote
Old 07-15-2015, 07:04 PM #14
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

Well, the bottom line is.... if nothing works for you, then you may have a hereditary genetic form of PN.... CMT (Charcot Marie Tooth)

You can investigate testing with Athena labs... which is expensive, but it may provide an answer for you.
__________________
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
"Thanks for this!" says:
Susanne C. (07-15-2015)
Old 07-15-2015, 07:35 PM #15
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,432
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,432
15 yr Member
Default

One of many sites concerning Raynauds.

http://www.niams.nih.gov/health_info...aynauds_ff.asp

Another site for erythromelalgia.

https://rarediseases.org/rare-diseases/erythromelalgia/
Kitt is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Eskiemom (07-16-2015)
Old 07-15-2015, 07:37 PM #16
jurgen975 jurgen975 is offline
Member
 
Join Date: Feb 2010
Posts: 181
10 yr Member
jurgen975 jurgen975 is offline
Member
 
Join Date: Feb 2010
Posts: 181
10 yr Member
Default

I am also in doudt if my supplements work
I used to use acethyl L-carnitine and alpha lipioc acid 1600 mg &borage oil1300mg including Q10
Afterthat i used PEA and vitamine D 2000 iue for a period of maybe 1,5 mouths

Nowadays i use Curcubrain,R-lipioc acid Qunol Q10 and somethimes inositol.

I know its all trail and error but and especially if you have a toxic PN R-lipioc acid should be used including qunol q10.
But i wander if this is doing anything for me.
I didnt notice any real difference with al these supplements.

I could be wrong but pea and vit d could have made a minor minor difference but overall i reeally havet felt any BIG change when using all this stuf.
So what is the right stuff to use?????????????????????????????
jurgen975 is offline   Reply With QuoteReply With Quote
Old 07-16-2015, 04:15 PM #17
Eskiemom Eskiemom is offline
Junior Member
 
Join Date: Jul 2015
Posts: 29
8 yr Member
Eskiemom Eskiemom is offline
Junior Member
 
Join Date: Jul 2015
Posts: 29
8 yr Member
Default

Quote:
Originally Posted by mrsD View Post
Well, the bottom line is.... if nothing works for you, then you may have a hereditary genetic form of PN.... CMT (Charcot Marie Tooth)

You can investigate testing with Athena labs... which is expensive, but it may provide an answer for you.
Thanks.
I've asked five neuro's and my primary and they all say I don't have it.
My clinical exam is perfect. Strength, reflexes, feeling, etc.

Yet this afternoon, my right toe turned into a sparkler! And the symptoms travel up the entire inside of my right leg from great toe to top of inside thigh.
Rumbling twitching all over my legs.

I had testing by Athena Labs two years ago....those neuro's said they tested me for everything and all came back normal. I'll have to check if they tested for CMT.

Last edited by Eskiemom; 07-16-2015 at 04:19 PM. Reason: additional info
Eskiemom is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Kitt (07-16-2015)
Old 07-16-2015, 04:43 PM #18
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,432
15 yr Member
Kitt Kitt is offline
Grand Magnate
 
Join Date: Aug 2006
Posts: 4,432
15 yr Member
Default

Check your Private Messages.
Kitt is offline   Reply With QuoteReply With Quote
Old 07-16-2015, 04:44 PM #19
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

Pain only in the big toe may be coming from compression higher up at the knee or spine. I dislocated my knee years ago and the pain went straight to my toe. The Chiro had me draw it on a human outline, in my information papers when I went there.

When she adjusted my knee... the toe pain was instantly gone.

But now when I get pain in my toe, I put a Lidoderm patch behind that knee and the pain goes away in the same fashion.
The magnesium lotion also works that way for me.
https://www.pinterest.com/pin/487162884665368556/

PN type pain can come from mechanical issues, compressions, or spinal compressions.
__________________
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.

Last edited by mrsD; 07-19-2015 at 12:59 PM. Reason: fixing spelling
mrsD is offline   Reply With QuoteReply With Quote
Old 07-18-2015, 04:00 PM #20
Eskiemom Eskiemom is offline
Junior Member
 
Join Date: Jul 2015
Posts: 29
8 yr Member
Eskiemom Eskiemom is offline
Junior Member
 
Join Date: Jul 2015
Posts: 29
8 yr Member
Default

Quote:
Originally Posted by mrsD View Post
Well, the bottom line is.... if nothing works for you, then you may have a hereditary genetic form of PN.... CMT (Charcot Marie Tooth)

You can investigate testing with Athena labs... which is expensive, but it may provide an answer for you.
No CMT. I was tested for all variants and was negative.
It's progressing about two inches per week.
Eskiemom is offline   Reply With QuoteReply With Quote
"Thanks for this!" says:
Kitt (07-18-2015)
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
Anyone tried this supplement? baba222 Peripheral Neuropathy 4 09-23-2014 02:40 PM
Work issues - they want me to work part time chaos Reflex Sympathetic Dystrophy (RSD and CRPS) 14 02-06-2014 10:08 PM
New Supplement for PCS? aliciaj Traumatic Brain Injury and Post Concussion Syndrome 1 12-06-2012 12:25 AM
I anyone using this supplement mistiis Vitamins, Nutrients, Herbs and Supplements 5 10-25-2008 03:55 PM


All times are GMT -5. The time now is 07:16 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.