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Old 10-17-2012, 01:01 PM #1
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It is difficult to predict.

Fast onset PNs typically are blamed on viral infections.
They can come on from poorly cooked chicken and other foods, because of a bacteria called Campylobacter.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC88896/

You really need conduction tests to see what is going on with you.

Don't take the B12 for a few days before your tests. And get the Vit D test too. Might as well get those out of the way.

Good luck at your doctor's appointment.
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Old 10-17-2012, 02:27 PM #2
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I am that fellow that MrsD referred to above. I am an alcoholic, albeit a sober one. I drank for about 20 years daily, now I am 440 days sober. I pretty much went from a healthy average sized person to a drunk in a wheelchair. If you follow the thread on that you will see that 3 things worked for me. One, I quit drinking and started eating. Two, I forced myself to exercise a little bit a day to keep the legs moving and three, I took MrsD advice and went on a vitamin regime of:

Centrum Men Under 50, Multivitamin, 200-Count Bottle
Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
Jarrow Formulations Jarrow B-right Complex, 100 Capsules

I am now walking without my cane most of the time, can work FT and I feel great.

Now, I dont know what percentage of PN sufferers beat it, but in my case I pretty much did. I will most likely have many lingering effects over my lifetime, but where I am at today beats the hell out of where I was 1.5 years ago.

Stay positive, force yourself outside and you have a chance! I am walking proof of that.

Ice in VA
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"Thanks for this!" says:
glenntaj (10-18-2012), mrsD (10-17-2012)
Old 10-17-2012, 04:24 PM #3
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Quote:
Originally Posted by Icehouse View Post
I am that fellow that MrsD referred to above. I am an alcoholic, albeit a sober one. I drank for about 20 years daily, now I am 440 days sober. I pretty much went from a healthy average sized person to a drunk in a wheelchair. If you follow the thread on that you will see that 3 things worked for me. One, I quit drinking and started eating. Two, I forced myself to exercise a little bit a day to keep the legs moving and three, I took MrsD advice and went on a vitamin regime of:

Centrum Men Under 50, Multivitamin, 200-Count Bottle
Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
Jarrow Formulations Jarrow B-right Complex, 100 Capsules

I am now walking without my cane most of the time, can work FT and I feel great.

Now, I dont know what percentage of PN sufferers beat it, but in my case I pretty much did. I will most likely have many lingering effects over my lifetime, but where I am at today beats the hell out of where I was 1.5 years ago.

Stay positive, force yourself outside and you have a chance! I am walking proof of that.

Ice in VA
Is that what you take? I've been taking B-complex, B-12, B-12 shots. I'm not having much luck as far as improvement goes. I guess I'll have to reach out a little further and try the benfotiamine. And the Jarrow mixture. I'll have to take the Centrum over-50 though!

That's a good story, bro. I've got about 9 months off the bottle. At least my symptoms have stabilized and not spread, I can say that much, I've got the sensory PN in my feet and it hasn't affected my motor skills, but it's atropied my leg muscles and caused all kinds of unreal pain in my feet. I will say that the doc got me on a time-release 24 hour 200 mg neurontin pill and that's helped A LOT. Plus the gabapentin. Glad you're working full-time, I've had my worries about the same thing.
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Old 10-17-2012, 05:35 PM #4
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Is that what you take?
Um, yep. Had to get a couple refills, but I think I started back in March...I get everything via Amazon...

I had the tingling feet, zero balance, couldnt stand or walk, numbness, but I had no pain...none at all.

I also have a drink called 989 everyday...its full of good stuff and all natural.
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Old 10-17-2012, 06:37 PM #5
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Thanks, Icehouse.

Like you, my symptoms include tingling, numbness, lack of balance, inability to walk normally... same tingling/numbness in my hands, which is impacting my typing... and since I cannot feel my feet, I keep missing the brake pedal, so I'm not safe to drive ATM either... as a software engineer, I depend on being able to go to/from work, and type at a high rate, so this condition is really threatening my work - which is part of why I'm so anxious for some idea of whether I'll get over this or not.

(warning: pontification coming) The reality is, instead of focusing on the future obsessively (which creates my anxiety), I am using cognative therapy to try to retrain my brain to focus on today. Whatever happens with the job is beyond my control at this point - and reminding myself of that helps me stay focused on today instead of tomorrow.

I'll be asking my doctor to either test for, or produce from my records, levels for B1, B3, B6, B12, A, D, Thyroid, Pantothanic Acid, Biotin, and heavy metals. I'm also going to ask why we did not do an EMG, and suggest we should consider an EMG, conductive testing, and perhaps a nerve biopsy.

In the mean time, I've made new friends here, which is also helpful, as I live a very independant and isolated life and have almost no support group. Thank you again, all.

Peace and joy,

/Bob
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Old 10-17-2012, 07:31 PM #6
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Well, luckily you are in IT like I am, and telecommuting is an option I went from walking to a wheelchair overnight, then to a walker, then to a cane fulltime at Christmas ...now I use the cane sporatically. I find stairs with no railings a real challenge and I really cant walk more than 2 miles without being exhausted.

I really do hope you get better, I have been there and done that and its no fun.
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Old 10-24-2012, 01:13 PM #7
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B12 was 234 in the hospital, we're getting new tests done on a much broader spectrum tomorrow. I was lastr in the hospital in August so who knows how much the value has changed since I've been on B12 therapy. Also a follow up visit with my neurologist, but I need to find a new one because this guy has one of the worst ratings I've seen (59/100).

Sensation still improving, albeit slowly - still cannot feel the bottom of my feet so I keep missing the cars brake pedal - will have a hand control installed. Typing still sucks.

Will provide the updated numbers when they're available. Thank you again for all your support.

Peace and joy,

/Bob
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Old 11-09-2012, 05:20 PM #8
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Quote:
Originally Posted by Icehouse View Post
I am that fellow that MrsD referred to above. I am an alcoholic, albeit a sober one. I drank for about 20 years daily, now I am 440 days sober. I pretty much went from a healthy average sized person to a drunk in a wheelchair. If you follow the thread on that you will see that 3 things worked for me. One, I quit drinking and started eating. Two, I forced myself to exercise a little bit a day to keep the legs moving and three, I took MrsD advice and went on a vitamin regime of:

Centrum Men Under 50, Multivitamin, 200-Count Bottle
Doctor's Best Benfotiamine (150 mg), Vegetable Capsules, 120-Count
Jarrow Formulations Jarrow B-right Complex, 100 Capsules

I am now walking without my cane most of the time, can work FT and I feel great.

Now, I dont know what percentage of PN sufferers beat it, but in my case I pretty much did. I will most likely have many lingering effects over my lifetime, but where I am at today beats the hell out of where I was 1.5 years ago.

Stay positive, force yourself outside and you have a chance! I am walking proof of that.

Ice in VA
I am a bit behind in this thread, but congrats on 440 days Icehouse!!
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Old 11-10-2012, 03:38 PM #9
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another interesting read regarding D2 vs D3. In this case, the doctor has prescribed the following:

Vitamin D (Ergocalcifero) 50,000 IU CAPS with a dosage of 1/week. I have ordered D3, as Ergocalcifero is D2 (Fat soluable), PP 5000 IU. I have a Dr appointment tuesday 11/13 and will discuss D2 vs D3, and whether we want to change this.

Can a person take too much D (say I took both the D2 1/week and the D3 daily)?

/Bob
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Old 11-10-2012, 03:54 PM #10
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I predict your doctor won't know at all about the two versions.

If you take D3, you won't need the other at all.

The only reason the doctors order it, is because it remains in their old outdated therapeutic references.

You can go ahead and take it. But don't expect much from it.

Quote:
Am J Clin Nutr. 2006 Oct;84(4):694-7.
The case against ergocalciferol (vitamin D2) as a vitamin supplement.
Houghton LA, Vieth R.
Source

School of Nutrition and Dietetics, Acadia University, Wolfville, Canada. lisa.houghton@acadiau.ca
Abstract

Supplemental vitamin D is available in 2 distinct forms: ergocalciferol (vitamin D2) and cholecalciferol (vitamin D3). Pharmacopoeias have officially regarded these 2 forms as equivalent and interchangeable, yet this presumption of equivalence is based on studies of rickets prevention in infants conducted 70 y ago. The emergence of 25-hydroxyvitamin D as a measure of vitamin D status provides an objective, quantitative measure of the biological response to vitamin D administration. As a result, vitamin D3 has proven to be the more potent form of vitamin D in all primate species, including humans. Despite an emerging body of evidence suggesting several plausible explanations for the greater bioefficacy of vitamin D3, the form of vitamin D used in major preparations of prescriptions in North America is vitamin D2. The case that vitamin D2 should no longer be considered equivalent to vitamin D3 is based on differences in their efficacy at raising serum 25-hydroxyvitamin D, diminished binding of vitamin D2 metabolites to vitamin D binding protein in plasma, and a nonphysiologic metabolism and shorter shelf life of vitamin D2. Vitamin D2, or ergocalciferol, should not be regarded as a nutrient suitable for supplementation or fortification.

PMID:
17023693
[PubMed - indexed for MEDLINE]
and
Quote:
Rev Med Interne. 2008 Oct;29(10):815-20. Epub 2008 Apr 11.
[Vitamin D2 or vitamin D3?].
[Article in French]
Mistretta VI, Delanaye P, Chapelle JP, Souberbielle JC, Cavalier E.
Source

Service de chimie médicale, CHU de Liège, université de Liège, domaine du Sart-Tilman, Liège, Belgique.
Abstract
PURPOSE:

Nearly one billion people around the world are deficient in vitamin D and need to be supplemented. Vitamin D is available in medicines and fortified foods. It is available in two forms: vitamin D2 (ergocalciferol) and vitamin D3 (cholecalciferol).
KEY POINTS:

The pharmacopeiae consider these steroid hormones as equivalent and interchangeable. However, several studies have showed that serum level of 25(OH)D is increased more effectively with vitamin D3 than vitamin D2. Vitamin D2 has shorter plasma half-life and a lower affinity for the vitamin D binding protein, the hepatic vitamin D hydroxylase and the vitamin D receptor.
CONCLUSION:

Vitamin D2 should not be regarded anymore as suitable for supplementation or fortification. Currently though, it is still the most used in some countries such as Portugal and Australia.

PMID:
18406498
[PubMed - indexed for MEDLINE]
Have you read this link and watched the two videos on it?
http://neurotalk.psychcentral.com/thread92116.html

Now is the time before your next appointment.

Things are changing rapidly about Vit D supplementation.
It will be a while yet for doctors to understand it all.
It is not unlike the poor interpretation of B12 levels, which continue now a decade later inspite of medical continuing education to the contrary about making 400pg/ml the new low for humans.
This article on THAT from 2003, written for doctors:
http://www.aafp.org/afp/2003/0301/p979.html
There are still doctors who don't understand ORAL B12 treatments today.

And BTW both forms are fat soluble. I can't see any reason for using D2 (ergocalciferol) today at all. D3 is even less expensive.
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