Hi, I'm a new member and have been learning a lot from the PN group. The insight and wisdom that has been acquired through research and experience (the hard way) is invaluable to those of us newly diagnosed. I'm very impressed and hope that I can be an asset to the group as well.

I was recently diagnosed at Mayo Scottsdale with idiopathic small fiber PN and carpal tunnel triggered by hypothyroidism. Generally I do okay with splits on my wrists at night, a strange assortment of electrical zips, zaps and zings during the day, and numb toes. I'm not diabetic and have had sufficient quantities of blood withdrawn to prove it!

This has probably been covered by prior posts but my Mayo doctor recommended alpha lipoic acid as a supplement to help cure/forestall the progression of the PN. Has any one had success or noted a difference when they take this supplement? He also suggested vitamin E but told me the B's wouldn't help and to be careful with the B-6.

Thank you!

Welcome to the forum AzHiker,
I know of the aggravation of carpal tunnel in one wrist and wearing a splint does help but after the small operation i had to fix it, i wouldn't hesitate to have my other side done, if it started to carry on too.
I was diagnosed as having small fibre damage and some large nerve too, mine was caused by Prediabetes, which was picked up by a 3 hour Glucose Tolerance test and i was low on B12 as well, i am nearly cured these days but it took 3 years to repair the damage which was definatly helped by daily Mult- B & B12 supplements and injections of B12 Hydroxocobalamin, and of course changing my diet to low GI foods & excercise fixed the prediabetic state as well.
There are many reasons why small fibres can be damaged, Diabetes is common but there are many are reasons why this happens to people, if you go to the " Important Links & Stickies ": on the front page up top there is a mountain of info that is well worth reading, & Liza Janes charts are very valuable to keep a record of your progress & they also show the many tests that are available to find the cause of your PN, also i would recommend you read Roses B12 site http://roseannster.googlepages.com/home.
I don't know why your doc said Vitamin B won't help, as a combination of multi B with B12 Methylcobalamin helps repair nerve damage.
I never used A/L acid, but i think there is a newer version of it R - Version thats available now, i only know it can be helpfull for Diabetics, but i am sure others here can give you a lot more info on that supplement than i can.
Others will be along shortly, good luck
Brian

Hi Brian and Azhiker,

Brian I was hoping to ask you a few questions. This week I had that same long glucose test and my doc expects it to come back showing pre-diabetic or metabolic syndrome.

While I have some other neurological symptoms related to TOS.

And I do not want to jump to concusions until I get these test results but I am having some PN like symptoms in my feet similar to what some describe and I wonder if they are related to my potantial pre-diabetic state.

You mention that you had some damagae but that you are cured and it took 3 years. Can you provide any more insight into what you did?

Also can you expand on what low GI foodds are?

I will absolutely visit Rose's site and Liza Jane;s charts but hoping you may have more insight I could learn from

Thanks

Shelley, it will best to send you a Private Message, so not to intrude on this new thread.

Welcome to this forum. I've done very well over the years with a boatload of supplements, covered in my long post in the "Stickies" section above. Google is very useful to find out about supplements and treatments. Simply bring up www.Google.com and type in "alpha lipoic acid peripheral neuropathy" . http://www.google.com/search?hl=en&s...opathy&spell=1 . Another good source is the iherb Health Encyclopedia at http://healthlibrary.epnet.com/GetCo...7-5fe33da65dd4 .

One caution is that there is NO magic pill for PN. I feel that PN is the manifestation of many underlying weakness and lack of optimal health. If the underlying problems weren't manifested as PN, they would be manifested in some other way. The best way to cope with PN and to promote healing is to restore optimal health through diet, exercise, attitude, getting help, spiritual strength, and a support network to facilitate all of these. Anyway, that approach has helped me go from virtual incapacity to being very active and usually pretty pain free.

Supplements generally should be taken with an eye to maintaining balance in the body, and not to excess. Things work together. For example, carnitine (an amino acid) works WITH ALA (alpha lipoic acid) to help muscle function, nerve function, and nerve healing. In like fashion, calcium-magnesium complex needs vitamin D to be utilized by the body. However, being an AZ hiker, you probably get enough sun exposure to not require supplemental D. This is a complex field. My post, and posts by Rose and MrsD are a starting place for you to decide what's best for you. Whatever you choose to supplement with isn't a simple decision. Like drugs, many supplements have unintended side effects so you really should study first, come up with a supplement program for yourself, and then bounce it off of the people in this forum.

BTW, unless they've made a special study of the topics, MDs get virtually no training in non-drug supplementation or dietary changes for healing and sometimes give terrible advice based on little research or knowledge. Give careful consideration to what your doctors recommend because they understand physiology on a much deeper and wider level than most of us, but you still have to do your own research on the topic, or consult with a clinical dietitian.

--here's a thread we've sarted about alpha lipoic/R-lipoic acid on the Vitamin/Supplement board here at Neurotalk:

http://neurotalk.psychcentral.com/sh...ad.php?t=15985

I would not think you'd have trouble with B-vitamin supplements except possibly for B6; there is evidence that for certain people with enzymatic deficieincies, megadosing of B6 can lead to neuropathic symptoms:

http://www.neuro.wustl.edu/neuromusc...yridoxineintox

However, many people who suspect they might be thus affected report no problems with the P-5-P coenzymated form of B6, rather than just the usual pyridoxine that is used in most standard supplement formulations.

Thanks Brian....

And AzHiker to the forum.

Hi and welcome AzHiker,
I am agree with what you say about the wealth of experience and support in this PN community. I am new to here to and have found this forum invaluable and the support incredible, it has helped me so much.
Lupin

I have had carpal tunnel since I was 30 thereabouts. It became very severe
during my pregnancy when I was 34. I am also hypothyroid.

I am 60 now, and it flares sometimes. Too much fluid retention can make it
bad so I limit salt.

For years the only thing that worked was a special B6 called P5P.. this is activated form, and comes in 50mg tablets. Some people do not activate
pyridoxine to its active pyridoxal form in the liver. B2 is needed for this, enzyme to work (pyridoxal kinase) as well. I brought P5P to the net many years ago
on BrainTalk, and many people have used it with success.

I'd consider it, if I were you. Most doctors do not understand B6 chemistry at all....just ask your doctor which drug affects pyridoxal kinase. First ask him/her if he can define pyridoxal kinase! I'll tell you the answer = theophylline. But your doctor will not know this. Some doctors know that INH (isoniazid) therapy depresses B6...but that is old news and they don't know "why" as a rule.
http://www.ncbi.nlm.nih.gov/entrez/q...t_uids=2535870

Zinc is also important for B6 functions:
I cringe every time I hear of a doctor telling patients to avoid B6... this is
just not true. The failure of pyridoxine in the body leads to deficiency and the deficiency signs are identical to the toxic ones. (and extremely high doses for long periods of time are needed for toxicity.)

This is a very up to date and complete monograph on B6:
http://lpi.oregonstate.edu/infocente...nB6/index.html
I found only 50mg of P5P daily gave significant improvement. I've been doing this for years now.
I use the NOW brand (which has B2 in it as well as some magnesium).

Another B that really helps is thiamine. Anyone with PN should try thiamine
as well. At least 200mg/day in divided doses.