I am going to start this thread, because the subject seems very
new and important.

Everyone is welcome to post on this thread any additional data, personal experiences and questions.

Here is one link I just found concerning diabetic neuropathy:

http://archinte.ama-assn.org/cgi/con...ract/168/7/771

This study was small, and unblinded, but is interesting nonetheless IMO.

On this link Mark describes how his improvement occurred after he starting fixing is low Vit D status:
http://neurotalk.psychcentral.com/sh...119#post293119
Search Mark._. to read his previous posts with his symptoms.

This is the link to D-Action...the group that made the medical video that is on YouTube currently:

http://www.grassrootshealth.net/
and here is their video which I link to often:

http://www.youtube.com/watch?v=TQ-qekFoi-o

This link also has alot of information on Vit D:
http://www.vitamindcouncil.org/

I've been watching the boards carefully for a long time here.
All of the boards are showing low D levels in patients who get tested. I think I have only seen a couple who were in the 40-50 ng/ range! Many have tested very low, almost in the single digits!

It is best to get a blood test to see where you really are. However, the recommendation now, is that 2000IU a day are safe for people who do not have testing. This dose may not raise you much, but there is nothing to say, it is dangerous.

The only exception to this remains those patients with sarcoidiosis. This inflammatory disease appears worse in patients who have higher D levels. This is not understood yet, and until that time that more data are available, those with sarcoid should consult their doctors before using Vit D supplements. Sarcoid is not a common disease.
This link discusses prevalence of Sarcoid and gives data for various ethnic groups and ages most commonly affected:
http://www.pulmonologychannel.com/sa...evalence.shtml

If one looks at the links above, one can see some of the new data coming out about Vit D status and chronic pain.
http://pain-topics.org/clinical_concepts/vitamind.php

http://newsblog.mayoclinic.org/2009/...c-pain-relief/

One myth still surrounds Vit D... and that it can be had from the diet. This is just not true. 8oz of milk typically have 100IU of D2 added!
If you live in colder climates, or do not go out into the sun without sunscreens, you cannot make your own Vit D adequately.

So glad you are starting this, and I look forward to prayerfully being a 'link' you put here for someone whose cure was Vitamin D!

My neurologist called today. Asked me how I was. I told him I'm not sure because he was calling me!
He told me that my bloodwork all came back within normal ranges except for the D (you and I knew that, but he had not yet called to discuss with me).

He said he has seen Vitamin D deficiency cause symptoms that mimick neuropathy. He wants me to just focus on getting these levels up and not do any more testing at this point. He is highly suspect that this is my problem.

As a refresher, I was dx with bilateral Tarsal Tunnel--confirmed through a nerve conducitivty test. Well, the test showed some issues anyways. To the podiatrist, it confirmed it was probably Tarsal Tunnel. I had one surgery to release the area and it did not 'take."

Neurologist said that bilateral entrapment in this way is rare. So not sure what that means for why I tested that way on the nerve conductivity test...

He told me to wait at least a month to expect any improvement in symptoms.

Thank you, thank you, Mrs. D. for starting this thread, and for posting all of the links for reference.

My Vit D was 26, and I was told it was well within normal ranges. I have it up to 45 now, but only because I decided to fix it.

Always request a copy of the results, and look them over yourself. My ferritin was only 22, and I was told everything is fine, 20 is anemia. I also have that up to 40 now. It had been at 22 for over a year when I mentioned the level, that's when I was told maybe ferritin IV's were needed.

You have to watch out for yourself. Many people have been told Vit B12 at 200 is fine too, and we all know that isn't true. Research, research, research.

I've been supplementing? But I know I'm still deficient tho docs haven't done THAT type of test in a while... Going to see one soon and ask [Hope, Hope] that it'll be ordered. I say this because of an injury and then another over the summer. I have literally become a cave-dweller and I do know that I can't wait for warmer weather to go out and soak up the natural stuff! Going that route certainly can't hurt supplements, which aren't really kicking in due to other issues as much as I'd like, nor expected due to those issues. Sigh?
Like the 'B's', the 'D's' haven't been given their due as they should as building blocks to life. A person can only do so much of 'mind over matter' to get well? Supplements and good 'groceries' are needed as well!
Thanks from the bottom of my heart -you've helped me soo much and I know you do a lot for others too! 's not enough of them? But the best I can do 'on-line'! - j

my rheumatologist has had me on vit d for at least 5 years (can't remember exactly how long). Low vit d seems very common through society as a whole, it does not seem to be restricted to people with a certain condition.

cheers
raglet

The timing of this thread couldn't have been better for me. My history is rather complicated, but briefly: I was diagnosed with SFN in early 2005. In late 2007 I started a very quick decline. After a year of multiple tests, and hospitalization in late 2008, finally had Autonomic Testing that revealed moderate Autonomic Dysfunction (CASS score of 6). I was referred to Vandy's neuromuscular clinic. My B12 levels have always been in the mid 500's, but he ran a full B panel, and found that I had a Vit B6 deficiency. He actually expected to find Vit B6 levels too high. Vit B6 is evidently one of rare nutrients that can cause PN by either deficiency or excess, although deficiency is rare.

Between appointments, my mother, who has Mal de Debarquement Syndrome (MdDS) was found to have a Vit D deficiency. (She was actually tested for Vit D because of joint pain.) Within weeks of starting Vit D, not only was her pain diminishing, but her MdDS cleared up. She had been 'rocking' for almost 4 years, and suddenly one day the rocking stopped. Her energy levels increased, and when I talked with her she sounded almost giddy. She insisted I get my Vit D checked.

So, at the next appointment I asked the neuro if he would also test Vit D along with the B6. He humored me. The results were 11 ng/mL - an obvious deficiency. Since Vandy is 4 hours away, and his schedule runs 4-5 months out, he suggested I see my GP for treatment. I took the Vandy results to my GP, who ran his own tests.

His nurse called 2 weeks later to tell me that she was mailing my lab results and a prescription for Vit D - that I did, in fact, have a deficiency. Your post, MrsD was a reminder that I had never received them. Thank You! So, I called and asked they be re-mailed. They came yesterday. Vit D was still 11 ng/mL. The prescription is for 50,000 Units once a week.

I spent the better part of yesterday reading through all of your links, and found that in several of your posts you discussed Calcium and/or PtH deficiency as typical with Vit D deficiency. I have kept all of my lab results since the onset of SFN, so looked back at the results for both. I have been tested for Calcium 13 times. It has always been at the high end of the reference range, and three times has been above. Along with the Vit D, my GP also tested Calcium. It was 9.8 with a range of 8.6-10.2. I have only had PtH tested twice. Both times it was within normal ranges.

MrsD, I would like to hear your thoughts about the Calcium levels. I ran other internet searches and could find nothing that would explain. Also, do you think Vit D deficiency may contribute to neuro problems overall?

Thanks again MrsD. If OK, I'll post my progress here.

I read not too long ago that if you live north of Atlanta, chances are you are quite probably deficient in Vitamin D. Joan

Some people have high serum calcium. It may be due to the way they process it. Or it might indicate bone tear-down because you are not absorbing enough from food due to low D.

The parathyroid gets involved here, and this gets complex. I don't really understand it all myself, but some people have a condition called Paget's.

Here is an article about high calcium in the blood.
Paget's is #7 listed. People with Paget's also have elevated alkaline phosphatase enzyme levels (liver tests).
http://www.parathyroid.com/high-calcium.htm
I don't agree that it is so "rare"... And I don't agree with the high Vit D intake...that has not shown to be very common in recent studies, but was cited in the "old days" along with warnings about D and hypercalcemia.

It can get quite complex, so don't over worry yet.
I am reminded of a show I saw recently Dr. G (the Science
channel's autopsy show)... she did a post on a 55 yr old woman who suddenly died, and found the Paget's in the skull when she took the skull off. But there were no other signs of it and Dr. G said that is what sometimes happens. The Paget's can be mostly silent, and rarely if ever results in death. (the woman died of alcohol abuse and diabetes).

If you fix the D levels, then have the calcium redone, you'll know more.
You'll also want adequate levels of magnesium as this mineral helps get calcium into the bones. Low magnesium would impair bone building in general.

The heart needs calcium to work, and so do the nerves. So when calcium is low, the body tears down bones to provide it.
(low D would reduce absorption from food and supplements as well from the GI tract).

And certainly all of us would be pleased to have you continue posting here your experiences and progress. We all help each other this way.

Thank you MrsD. I'm to follow up with Doctor in 4 weeks for retesting. I'll post the results then.

Mine is dead [diagnosed 2 years after my neuro stuff started], and, after my neuro diagnosis, where the neuro suspected some likely asorbtion issues, I am suspecting that my parathyroid is picking up part of the slack from the loss [along w/meds?] but I wonder about how much the parathyroid can do under the circumstances. I know it can do some, but in all? How much of 'some' is some?
The orthopedist treating me this summer suggested 'forteo' instead of Fosamax+D and that it DOES increase bone density.... Not fond of the concept of 'self-injections'? But if other docs agree, mite go for it.
Any which way it's a danged if you do or don't situation in my book at this point?
Those deliteful blood tests only tell you what's swimming around IN your blood, not what you actually PROCESS...that's the scary part for me about now.
Thank you as always for your great research! It boggles the mind and then some...but parts of it do get thru to this brain at times! - j