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-   -   iodiopathic small nerve fiber neuropathy (https://www.neurotalk.org/peripheral-neuropathy/162630-iodiopathic-nerve-fiber-neuropathy.html)

pinehurstcharlie 12-30-2011 09:34 AM

iodiopathic small nerve fiber neuropathy
 
I am new to this as of a few months although the pain was here for about a year. I just want to understand if others have had this for years and no progression really or does it progress pretty fast. I just wish I could pin point the cause , as I've read it could be 200 reasons besides the major ones . I've so far not seen a neuro that seems to care. Please advise or guide. I"m in North Carolina

mrsD 12-30-2011 11:25 AM

Progression will happen with hereditary forms. Also with some autoimmune forms that are aggressive.

I've had metabolic PN for over 30 years, and my PN now is less than before with my interventions to improve the metabolism.
(thyroid hypo function and insulin resistance).

Some PNs due to triggers like gluten in the diet (or other food intolerance) will progress as long as you are exposed to the triggers. Remove the trigger and it will stop and maybe reverse.

Toxic neuropathies, will continue as long as the toxic drug or substance you are exposed to continues. Hence being a detective helps with these quite a bit.

Continuing to get vaccines if vaccines are a trigger is obviously a bad idea too.

Fixing nutritional deficiencies like B12 and Vit D also may stop PNs from progressing.

These are just examples...it is impossible to cover all the environmental triggers that are out there today.

pinehurstcharlie 01-02-2012 10:08 AM

Yes I've been doing lots of reading and I see that I will have to become my own detective . I'm trying to find the triggers so that I can help the progression and my daily life . So far I'm not on the trigger but I'll keep working . Thanks so much for this site of wonderful folks and info.

hopeful 01-02-2012 12:35 PM

I have had small fiber neuropathy for 31/2 years now. I don't know the reason for it and it progressed very quickly. I hope you have success in finding the reason. I searched for a long time. Just recently, after being tested for everything they could think of and being misdiagnosed a few times, I have decided to focus on making me feel better. Although I still hold out hope, I also realize that I may never know the reason. Good Luck

zygopetalum 01-02-2012 07:02 PM

I'm a newby too but I am finding a lot of helpful information. These people know their stuff. Good luck,
Zygo

zorro1 01-02-2012 10:38 PM

Mine is not S/F however it has progressed a few inches per year until recently where something startling has occurred.

alpha lipoic acid!

3 weeks on 600mg/day and the last 4 days my PN went into total remission. Possibly the happiest few days of my life. Numbness was still there though but much less number (is that a word?)

Last night pain bounced back to 4-5 however this morning its back to a 2

I have delayed buying this stuff for years because it expensive at $30 (australian) for 60 at 300mg

Am trying to find a new source, what do you guys pay for it in USA?

mrsD 01-03-2012 12:57 AM

I think you should try the R-lipoic stabilized instead, if you can get it.

iherb.com ships to many countries. Many of us including me use the Doctor's Best 100mg daily. This is better absorbed and more potent. It is also available on Amazon.com here.(but I don't know their shipping details).

You have to take the alpha type on an empty stomach. It is best to do the same with the new R-lipoic too.

It is great that you are seeing improvement!

hopeful 01-04-2012 06:54 PM

Quote:

Originally Posted by mrsD (Post 837480)
I think you should try the R-lipoic stabilized instead, if you can get it.

iherb.com ships to many countries. Many of us including me use the Doctor's Best 100mg daily. This is better absorbed and more potent. It is also available on Amazon.com here.(but I don't know their shipping details).

You have to take the alpha type on an empty stomach. It is best to do the same with the new R-lipoic too.

It is great that you are seeing improvement!

Hi Mrs. D. I stopped at a new health store by me and asked for R-lipoic. They only had alpha. Can you tell me what the different is please? Also, i found a CVS that still had epsom lotion. I have never used it before but wanted to see if it would help me since I found some. I do think it helps a little. I just have a few questions, of course. How does it work? Does the magnesium get into the bloodstream from the lotion? Can it be used a few times a day? I appreciate any info you have to offer. Thanks alot!!!:confused:

mrsD 01-05-2012 01:27 AM

Quote:

Originally Posted by hopeful (Post 837960)
Hi Mrs. D. I stopped at a new health store by me and asked for R-lipoic. They only had alpha. Can you tell me what the different is please? Also, i found a CVS that still had epsom lotion. I have never used it before but wanted to see if it would help me since I found some. I do think it helps a little. I just have a few questions, of course. How does it work? Does the magnesium get into the bloodstream from the lotion? Can it be used a few times a day? I appreciate any info you have to offer. Thanks alot!!!:confused:

This is our most recent information on R-lipoic acid:

http://neurotalk.psychcentral.com/sh...ht=lipoic+acid

R-lipoic stabilized is far more potent and better absorbed than the alpha type. So why use something that barely works (alpha), when a better form is available now for less $$? Most of us are using Doctor's Best, since it is affordable and of good quality. 100mg a day is effective for most people. If you can tolerate higher, go up slowly. (it can be stimulating for some).
If you use drugs for diabetes, test often, as the blood sugar may come down.
iherb.com or Amazon's has it online. I haven't seen R-lipoic in any stores yet. It is too new.

There are two kinds of R-lipoic --some are not stabilized and therefore not as well absorbed. The stabilized form is therefore the one to choose. It will say clearly on the label "stabilized" or NaRALA Doctor's Best is the most affordable IMO.

Yes the magnesium is absorbed. But there is no way to tell how much or how far it goes. It may remain regionally where you apply it. I have seen on the net a recommendation to use
a "dime sized" amount. But the CVS product does not have concentration given, so there is no way to know how much is absorbed. The Kirkman cream, which is quite expensive gives 100mg/1gram of cream. It is used commonly in autistic children, so dosing is more critical than adults who can tolerate more magnesium.
I find the CVS lotion really helps with controlling my blood pressure, so I know the magnesium is absorbed.

Magnesium is used in hundreds of enzyme reactions in the body, including the mitochondria. It relaxes tight muscles, improve vascular circulation, helps the heart, is involved in lipid metabolism, etc. It is lost in the urine in diabetics, and when people use diuretics including caffeine and alcohol. It is negatively affected by acid lowering drugs, which reduce its absorption from food. It is lost during steroid therapy.
Most people consume 1/2 or less of the RDA daily, because of poor food choices. Nuts and beans remain the highest sources.

hopeful 01-05-2012 12:45 PM

Ok hope I don't sound stupid when I say this but I but I put the loiton on my arms and legs such as if I would be using lotion for dry skin. Is it possible to use to much. I am not sure if the symptoms I had last night and today are just something new going on. I have terrible muscle pain in my arms and hands and elbows. My legs have some but not as much. Could the lotion cause this? This is the first time I have ever felt like this!


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