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Old 10-28-2012, 01:19 PM #21
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Quote:
Originally Posted by Thefarouk View Post
Which is of interest to me as I am a warfarin patient (Afib '2010, has not responded to any attempts to normalize, including cardiovert).

So now I have to wonder if my warfarin is having an affect on my PN...

/Bob
It might.... but you know I searched more than once for people, and didn't find a direct link to the Coumadin. But then not everything is documented, and in older patients, doctors tend to grasp the most likely diagnosis. If you are diabetic, they often won't look further (which is a shame too).

For example if you tell them you drink alcohol...and you are not diabetic...bingo they will diagnose alcohol induced neuropathy.
This eagerness however is blind to documented DRUG induced neuropathies, because doctors don't want to get involved in blaming a previous (or same self doctor) for giving you a drug that caused PN. They are very reluctant to blame each other. But they will blame alcohol for people for have been sober for years... we had one person who was sober for 20 yrs and still was given the alcoholic diagnosis!

The closest I can come to any useful info is this drug plugged into
http://www.drugcite.com/?q=coumadin
These are FDA reported side effects:
expanding neurological gives this:
Quote:
Dizziness
704 (.88%)

Syncope
233 (.29%)

Loss Of Consciousness
215 (.27%)

Hypoaesthesia
132 (.16%)

Somnolence
126 (.16%)

Paraesthesia
116 (.14%)
Coma
104 (.13%)
Depressed Level Of Consciousness
97 (.12%)
Lethargy
96 (.12%)
Balance Disorder
83 (.1%)
Dysarthria
73 (.09%)
I bolded the terms that could be construed as numbness and/or tingling/burning.
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Old 11-01-2012, 04:53 PM #22
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Thank you again, MrsD. You are a font of good information, and I have come to a better understanding of my condition thru the efforts of you and other members of this site.

Unfortunately today is a sad day. I just visited with my Neurologist. I have not had any noticable improvement in my hands or feet/lower legs (numbness/tingling/loss of tactile) for several weeks now. We haven't gotten the blood work results back yet (or they are at my primary doctors office - i just left them a message), but he says given the lack of progress, I should start thinking of this as a permanent condition, and start working with social security to be declared disabled.

The car conversion is going to run $2k-$3k which I cannot afford at this point, so I'm stuck not driving. Nearest bus stop is 1/2 a mile down a steep winding hill. Short term disability lasts until 2/16/13, then its up to the insurance board to decide if I qualify for long term (which per their guidelines I likely dont because I can walk, bathe, shower, eat), but without my fingers to type well, my career is over.

Peace and joy to all of you, and thank you again for your help. I wish you all the best.

/Bob
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Old 11-01-2012, 05:02 PM #23
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Quote:
Originally Posted by Thefarouk View Post
but without my fingers to type well, my career is over.

/Bob
Hogwash. I run a computer training center and I specialize in finding people with multiple felonies & long records jobs. If you can think you can work!

One word Bob: telecommute

Fins up and solve that problem, life goes on and it goes on well !!!
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Old 11-01-2012, 05:17 PM #24
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Let's see what turns up on the last testing.

I assume you had immune globulins tested? ANAs and all that stuff?

Let us know what your vitamins tested at also.

Some PNs can be turned around with supplements. But if you have a hereditary type, you will be stuck as there are no treatments for those.

There are voice activated softwares all over now.
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Old 11-09-2012, 02:39 PM #25
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Default A clue

Well it has taken a longer time than I expected to get results back and try to progress my PN. Today, I think I got a big clue though.

I requested a new neurologist because my old one could never answer why, and had essentially given up on me, trying to refer me to other doctors who arent even available until March. Fortunately my primary care physician doesnt tolerate that well either, and I'm working towards a new appointment with my new neurologist, who is one of Seattles 50 best doctors 5 years running.

However, we also finally got the results of all that bloodwork back, and while I dont have the full report yet (I'll get it on Tuesday), turns out my Vitamin D is way low. Came back at 12, and my understanding is the normal range is 30-100. Mind you, I'm already on a daily supplement that contains 800IU of D3 (Cholecalciferol) and was on that when the blood was drawn. My PCP is sending in a prescription for a mega D suppement, which I should go pick up in a few hours.

Too bad you're not my neurologist, MrsD, you'd of nailed this on the first day. Now lets just see if this does the trick.

Thank you all again for your support and love.

/Bob
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Old 11-09-2012, 02:45 PM #26
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The RX your doctor is writing won't work. (unless it is D3)

All RX D is D2 which is not active in humans.

The new normal is 50 not 30.

The general rule is 1000IU D3 for every 10 points needed to raise. Let's say you are 10 so you will need 4,000 IU D3 daily
and get retested in 3 months or so.

If you take what doctor orders...the RX D2, high dose, nothing much will happen and you will not progress:

This explains more in detail:
http://articles.mercola.com/sites/ar...d-mistake.aspx

Getting the testing was good. But sadly doctors don't treat the results properly yet. D3 is OTC and not expensive. You can get any type you want. I get mine at Puritan's Pride, online for pennies a day.
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Old 11-09-2012, 05:20 PM #27
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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 #28
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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 #29
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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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Old 11-13-2012, 04:39 PM #30
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Ok back from the latest checkup. Actually my Dr did know the D2/D3 issue, and requested D3 - apparently the pharmacy filled it as D2. We discussed, I'll be ceasing the D2 and start taking 10,000IU/day of D3.

Most of the other blood numbers are in

Vit A 0.39 mg/L (in range)
Vit B1 whole blood 163 nmol/L (in range)
Vit B6 75.4 ng/mL (high)
Vit B12 303 pg/mL (in range)
Vit D 12 ng/mL (insufficiency)
Cadmium <0.3 ug/L (in range)
T&H 1.93 uIU/mL (in range)
Arsenic whole blood <10.0 ug/L (in range, but a bit high)
Lead whole blood <2.0 ug/dL (in range)
Mercury whole blood 4 ug/L (in range)

Pending: B3, B5, B7

Finding a decent neurologist is being difficult - my doctor said, humerously, most neurologist suffer from Ashburies the point being, not many go into the field. The new neurologist just reviewed my chart and also wants to send me to UofW, but my primary care wont accept that the waiting list is into March. Since he knows the other neurologist he recommended, he's going to call them and they're going to have a 'chat' about my case, and he's "sicking his bulldog" (one of his med techs) on the folks at UofW until they agree to see me.

Some speech recognition software and a $3k hand control unit for the brakes on my car, and I may even be able to get back to work.

Hanging on...

and thanks again!

/Bob
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